Still Alive after all these years…

Once again I have not written in a while and a lot has happened. Life is always full of excitement around here.
First of all I have been a member of the Tampa UU church (Unitarian Universalist) for more than a year now and I am the Social Activities Chair, the Hospitality Chair, Vice Chair of the Stewardship Committee, and am just starting on the Worship Committee and in the midst of planning an entire service with another friend from Tai Chi and church.
I am still actively playing at Tai Chi, though not as much as I would like because of some health concerns. I was diagnosed with peripheral vein disease in my lower legs back in 1985 and had the first 2 surgeries done back then on the backs of my legs. Then, in December, 2013, I had the front veins on both legs done. Painful is a misnomer – it HURT – BAD!. Bruised from below knee to the groin and sore after 4 weeks.
Then, in response to increased leg, back, and neck pain I went to see a chiropractor and had some x-rays taken which indicated a compression fracture of a cervical vertebra and compressed discs and nerve damage to both cervical and lumbar vertebra. Now undergoing treatment for that. My cardiologist and chiropractor both assure me that in about a year I will probably be free from pain and able to feel my legs…I am keeping all fingers crossed as the pain is pretty extensive.
Now, for the most important piece of news. Back in June, 2012, I started seeing another therapist in addition to my long-term psychologist. When I went in the first time he asked to see a copy of my medication list which I always have available. He looked at the ones for psycho-tropic medications and looked up at me and asked, “Do you take all of these?” “Yes”. “Every day?” “Yes”. He then proceeded to educate me on the dangers of what I was taking. Yikes! Scary stuff I was on. Long story short, after about 6 months I started backing out of them. It has been so hard. I am almost hopelessly addicted to Xanax (I urge everyone to run like hell if anyone ever tries to give you one!). I took my last one on Dec. 27, 2013 and still feel the pull of it. Panic attacks, difficulty breathing, swallowing, lump in my throat – you name it, I’ve got it. For a while I was physically sick from the withdrawal. My cardiologist told me it is worse than heroin – more addictive and harder to quit. Never had heroin and never will. So, I am down to only one other psychotropic and have cut it down drastically (against my psychiatrist’s wishes). I hope to be “clean” in a couple more months. Maybe not over the addiction, but no longer taking anything.
So, consumer beware of anti-depressants, benzos like Xanax, and other psycho-tropics. They are not very healthy for your brain. Possibly actually caused my MSA and some other of my health problems.
Last weekend I attended the Florida Adlerian Society’s annual conference where Dr. Peter Breggin, author of numerous books on the dangers of psycho-tropic medications, spoke at length. What an incredible man he is. Very charismatic and when he spoke with me about my fear of getting off the drugs I have never experienced such love radiating out to me. They also showed the film, GenerationRx by Kevin Miller and Kevin also spoke. It was a great conference and I look forward to attending next year, too.
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My Brain is Dying and I do Tai Chi

My Brain is Dying and I do Tai Chi
I have a rare disease called Multiple System Atrophy (MSA) which causes the autonomic neurons in the cerebellum and other areas of the brain to die. As you know, the autonomic nervous system controls everything in the body that you do not consciously control: balance and coordination, heart, lungs, kidneys, eyesight, hearing, movement, etc. It is a Parkinson’s Plus syndrome, meaning Parkinson’s Plus ALS. To further complicate matters I have Rheumatoid Arthritis, Thyroid Disease, and 3rd stage Renal Disease.
When I hobbled into my first Health Recovery class in Temple Terrace on Nov. 2010, leaning heavily on a cane and unable to walk that way more than 20-30 feet I did never would have guessed how much my life was going to change.
I sat for 6 months before I was able to stand up and do a few Donyus. Then I was doing, 10, 20, 30, 40, up to 60. We did the set sitting down as I still could not stand other than to do the Donyus. Don’t know why I was still unable to stand or balance but that gradually changed.
By January, 2012 I decided I was ready to start my Beginner’s class with Tempie Taudte, my Health Recovery instructor. She knew of my condition and would watch out for me. Soon after, Brian Lau, a Continuing Instructor, suggested I try his Continuing Class on Tuesday and Thursday. He was also my DOM and acupuncturist so he also knew my problems and could watch out for me. I sat the first 4 classes and watched carefully as I had had only 4 classes of Beginner’s at that time. Soon the class asked me to join in and surrounded me with 4 people on all sides who knew what they were doing and I lasted the entire set. I can’t say I knew what I was doing, but I stood up and moved. I have kept it up ever since and every week I think I get a little more proficient.
It is now April, 2012, and I have 4 more weeks of my first Beginner’s Class. I am doing 6 hours of Tai Chi a week: 2 hours of Health Recovery, 2 hours of Continuing, and 2 different Beginner’s Classes. I have never been happier (except I have found my pants are tight in the thighs as I suddenly have muscles where muscles did not used to be!).
I am happy and I have found a new “family” and – a new passion along with my other passion, scuba diving, which I do with a divemaster or instructor as my buddy to assist me with my equipment
I still have balance problems and cannot stand on one foot (yet?) and I have started freezing when walking – but not when doing Tai Chi. My brain works with different circuits while practicing Tai Chi and does not allow my body to freeze. I recently saw my Neurologist and was told that Tai Chi has “re-wired” my brain. Life is good and Taoist Tai Chi has proven to be miraculous for me.
Mary Satterwhite, April 3, 2012.
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Been a long time gone…

I have not posted in two years now and a lot has happened. I surpassed by expected birthday and on my 66th I gave myself a party – Donate to Celebrate where my Tai Chi friends were asked to donate a minimum of $1.00. I raised almost $1200 to feed the homeless at another Tai Chi Center.
I am more mobile than I was, thanks to Tai Chi. I now set lead for 4 (well, 3 this term) Beginner classes (meaning I help demonstrate the moves and am placed where the new class can watch me as they do the moves) and I take 4 Continuing classes. The Continuing classes are very strenuous. I have also participated n 3 two-day Workshops and 3 3 hour Intensives and 2 or 3 2 hour Instructor Workshops. Altogether I do about 14 hours of Tai Chi per week (more if there is a Workshop or Intensive). Yes, I get tired and have to rest more than the rest of the group but I have learned to try to observe my limits after passing out last year at a workshop. Notice I said TRYING to observe my limits.
The disease is still progressing and now is in my intestinal system creating IBS and an inability to digest many foods I enjoy. I keep hoping Tai Chi can rewire those systems like it did my balance – as I can balance on one leg now. I do feel a generalized weakness, however, that was not there 8 months ago. I tire easily.
My RA is acting up with bursitis in both hips and tendonitis in my thumb and forefinger. I have a Doctor of Oriental Medicine I attend for acupuncture and that has helped a great deal.
I also joined the Unitarian Universalist Church last year and am now the Hospitality Committee Chair and the Social Activities Chair. I go in early to the church to make the coffee and set up the food on Sunday morning. I wash the dishes and clean up afterward. It is a lot of work but rewarding. I feel like I am giving something back to the community as well as the church.
We have a new pastor – Interim – Doak Mansfield – and I am enjoying his sermons. He is a caring person with a lot to say. I am sure I will learn a lot from him.
I also attend a Mindfulness Meditation group at the church once a week and that is helping to calm me.
In addition, as if I needed something else to do, I have a new rescue dog which I got when she was only 15 months ago. A wild child, hyper, high energy, unfocused and untrained. We are the third owners and she spent a week in “jail” (animal control” when she was turned in for being so hyper. I can now walk her calmly on a leash instead of running the Iditarod as she pulled me long like a sled. She will be a good dog when it is all said and done.
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Changes in Me

Changes in me
Well, folks, changes are a’coming. MSA has suddenly speeded up it’s progression in the past few weeks. These changes have put me on a roller coaster ride – what I call “Mr. Toad’s Wild Ride”.
First, my balance got way, way worse. I fell into the circulation desk three times today when I went in to check out a book and see my friends. I tried to ride a trike bicycle and wandered all over the sidewalk and going up a driveway was impossible.
Next, I suddenly could no longer focus my eyes. I can see with either eye by itself but my brain can no longer focus both eyes together. Consequently, I find myself cocking my head from one side to the other in order to use the computer. Newspapers are out of the question and have been for some time. Print is just too small, likewise most books and since I am a librarian books are a vital part of my life.
Lastly, for now, my sense of taste and smell is disappearing. I guess that is a good thing; maybe now I can lose some weight. It also means I don’t have to get up in the middle of the night when one of my cats poops and the smell wakes me up to go clean it up and spray down the kids’ bathroom. And, yes, they have their own bathroom area in the laundry area. Takes up a lot of space with 4 large litter pans, litter, a garbage can, litter bags, scoops, etc.
So, emotionally, I am getting pretty worn out.
I called my therapist 6 times on Monday saying first I needed to come in, then saying no, then saying yes, etc. He returned my call with his own voice mail saying I had better come in. That is a good thing.
Then, I called a close friend with whom I was supposed to have lunch with on Monday and cancelled, then called back and said yes, then called back twice more and said yes. I feel like I am going nuts and probably driving everyone else nuts while at it.
Finally, my essential tremor is worse and now my legs shake and my teeth rattle as well as my hands doing an almost constant tap dance. And handwriting is totally out of the question.
So, life is life and I am waiting, impatiently, for reconciliation (or whatever the word is I want here) to occur. Acceptance, that is the word. In addition to everything else, my memory is lousy for words and names and I am so forgetful that now when I am asked what I just said I just say, “I forget”. I laughed with some good friends at a Tai Chi banquet that I live so much in the moment, that any past moments are already forgotten. It sure saves on worrying about arguments with anyone as they are forgotten almost as soon as it occurs.
Take care of yourselves, good friends. Life is short and precious and don’t waste a second in living it.
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Last Night I Had the Strangest Dream

Last Night I Had the Strangest Dream
I was on a shoreline with a long concrete road going out into the water. It was 6 lanes wide with the center 2 lanes filled with construction equipment. All 4 of the other lanes were going only one way and that was out to the end of the pier. Almost to the end there were 2 cross lanes set up almost like a cross. These were only 2 lanes wide. All of the cars going out were at a standstill as no one could turn around and go back to shore. The edges of the pier were not a steep dropoff but angled gently into the sea so you could wade out into the deep. The water gently dropped off from an inch to about a foot every few feet or so. In the deep away from the pier there were massive ships from a cruise ship several stories high to ore carriers. Those of us wandering around at the edge of the water all decided we would not want to be on that ship in case of a hurricane. As we were watching I saw a yellow amphibious submarine painted brightly with flowers driving toward us in the shallow water only a foot deep. I yelled to the woman in front of me to move and we darted back. The yellow submarine had wheels like a 747 but its belly was only about 3 feet off the ground. It turned right into me and tried to run me down. I fell down and tried crawling on my back with my hands and feet under me as I looked up at the monster hovering over me. It could turn faster than I could and was much more maneuverable and I knew it was going to kill me.
It does not take a PhD to know what that yellow submarine stood for. MSA is coming for me and I cannot outrun it. I can evade but I cannot escape.
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Life is good

I am actually much improved over where I was 6 months ago, at least in some ways. The Tai Chi classes have improved me so much that my neuro has reduced my visits to every 6 months instead of 4. The one bummer is my nephrologist wants me off Celebrex and I have Rheumatoid Arthritis. My pc says we will watch my blood work and as long as my kidney function does not go down any more I can stay on it. I also have chronic kidney disease with only one kidney. The docs told me when I was 24 that my life expectancy was 64-65 and I am 64 now so I think I will prove them wrong. Since I have been prepared to die early in life, I have no fear of dying and I think of it as being freed from this earthly shell and released into my spiritual life. But the knowledge of dying early has also made me more aware of the beauty around me and the appreciation of every moment of every day and how special those people in my life are and how wonderful the natural life on the planet is. I enjoy my life fully and completely and intend to do so until I finally am freed.
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Tai Chi and Me

Tai Chi and Me
I started taking Taoist Tai Chi’s Health Recovery class in mid November of 2010. It was, and is, fantastic. This is a sit-down class for the most part but it has helped my balance immensely. Within 5 weeks I was able to stand up by myself and to walk more normally. I tried the Beginner’s class in January, 2011 and was totally lost. My brain cannot translate front to back and right to left. It was a huge class and on the second night I fell three times so cannot take it again. I still hope to learn the stand-up version of the moves (we do them sitting down right now) but it will have to be one on one with the instructor telling me which foot to move which way as I move my hands in which way. I can do the hands, to some extent, in the seated set, but they move very differently in the regular version. I still cannot determine if a hand if facing me or facing away from me. It helps when the instructor tells us which way to turn our hands.
We are having an open house for our center on May 21 and our Health Recovery class is going to demonstrate what we do in class. I am also going to give a testimonial of how much it has helped me. I just hope that is not one of my bad days when I am too dizzy as that is always a factor regardless of the Tai Chi’s balance influence. When my brain is messed up so goes my body.
Anyone who has a Taoist Tai Chi center near you, I recommend it. I don’t know anything about other Tai Chi forms, but I expect they would be equally good for you. I don’t know if anyone else has the Health Recovery class. In the Taoist Tai Chi, the instructors are all volunteers and I find that to be a factor in what makes the interaction between student and instructors more meaningful, I think. They are there because they want to help you and not to make money from you. There is a small fee to help pay the lease on the building where we meet, but if you are unable to pay there is no stigma or harassing you to pay. You pay what you can. We have a wonderful time and our group is tightly bonded. We go to lunch together every month which has deepened the bond.
The USF Movement Disorder Clinic which is part of the Neurology Department in the College of Medicine, covers the cost of the Tai Chi for those of us with Parkinson’s Disease or Parkinsonisms of any type if you belong to a support group. Since I started our support group for the greater Tampa Bay area it has grown to 14 people with more expected in our next class. We are also going to meet more often than quarterly (probably every other month). The Movement Disorder Clinic has recognized our group as a legitimate Parkinsonism group and the Parkinson’s Foundation will pay for my cost in the Tai Chi class.
This disease sucks but there are good people out there who care and who will treat you as a “normal” person, despite your handicaps. I have found such a group in Tai Chi so I now have three: my Lunch Bunch, my Atypical Parkinson’s support group, and Tai Chi. I also have a number of good friends with whom I can talk to about even the most embarrassing aspects of the disease.
So, I recommend Tai Chi for those of you who have MSA or any Parkinson’s variation.
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Living While Dying

Namaste underwaterLiving while dying
Mastering the art of truly Living while dying of kidney disease and MSA.
A journey through my soul.
About Me
Mershanti - Florida, United States
I was a librarian in the same library for more than 36 years (and the Assistant Director and later Director for most of those years) when I became disabled by a fatal neurological disorder called Multiple System Atrophy (MSA). Multiple areas of my brain concerned with balance, speech, and other autonomic systems are dying. I still visit the library every day for hugs and books.
Wednesday, August 26, 2009
Day by Day, Moment by Moment – Living with MSA
Living with MSA is like rolling the dice. You never know what you are going to come up with and it usually is not the same thing each time.Then, sometimes a third die gets thrown in and everything goes to hell in a handbasket. Some dice produce good moments and some produce really bad moments – but they are just moments. I can’t change those things that are happening, but I can change the way I look at them. I just have to remember to play the cards I am dealt with as much dignity and grace as I can. And, there is one advantage – I no longer feel I have to hang around with negative people whom I don’t like. I can just say “no”.
Having a good sense of humor is helpful, also. Sometimes I get up and can only shuffle (well, I’m up!) and it helps to remember Tim Conway in his “old man” skit. Then, maybe the very next moment, my knees suddenly fly out of my control and I look like a prancing pony that is double jointed. As I said, it helps to be able to laugh about these things.
This disease really is no fun. You truly do not know if you are going to be able to get up, are you going to be able to shift into your wheelchair, are you going to be able to go to the bathroom, are you going to fall (again)?, are you going to be able to speak or to swallow.Can you eat? Can you drink water? Can you breathe? It does no good to be angry or to feel sorry for myself. All that would do is cause me more harm. So, I try to roll with the punches and keep “the rubber side down” (a motorcyle phrase meaning to stay upright). Life is a strange, beautiful, and frightening place full of wonder, awe, fear, and pain. But it is LIFE, and I choose to LIVE a life as full as I possibly can for as long as I can.
I try to emphasize the good moments: to smell a rose, to hear the song of a bird, to read a funny joke or book, to watch a funny movie on TV. All of these distractions can help me mentally survive those not-so-good moments. If the time comes when I can no longer smell, or see, I will try to visualize and remember those pleasant experiences. I will try to go deep inside myself and see what I can do.If I can’t visualize and remember those special moments, I don’t know if I could stay sane. I can’t imagine being locked into my own head with no way to communicate with anyone – no way to escape myself. Then I look at Stephen Hawking. All he can move are his eyelids and that is how he communicates. There are always people who are worse off than I am. I have to keep reminding myself that.
I also try to always have something to look forward to. My husband and I eat lunch out together almost every day, but I try to have lunch with a friend from the City where I worked at least once a week. I have my Lunch Bunch, as well. This is such a close-knit group from all departments – finance to public work to library – but we have learned what we have in common. Most of us would not go out if this was not pre-arranged. I organized it, invited the people, made arrangements with the restaurant and send out emails the Monday before we meet as a reminder. We all laugh and share stories, talk about grandkids (those who have them), and just plain have a good old time. I am proud of myself for putting this group together. One member said this is the only time she meets with other people and this gives her something to look forward to.
In addition to weekly things to look forward to, my husband and I try to have a trip planned in two or three months so I can think of where we are going, look for RV parks to stay in, and enjoy the planning stage. This helps. Knowing that soon I will be seeing something new or different than just the neighborhood keeps me interested in the future.
I am happy with my life now – happy and sad at the same time. I believe I lived life a little more intensely now than before this diagnosis. I take time to study my environment when I am outside – even when sitting out in the back yard. I find joy in little things and appreciate nature in all its glory.
Posted by Mershanti at 1:27 PM 0 comments
Living while Dying – what do I mean?
Many people go through life like an ox walking around in circles, grinding corn. They are on automatic pilot; trudging to work, to home for dinner, TV, sleep and yard work on weekends followed by sports. They not only do not stop to smell the roses, the don’t even see them.
Think of a rose. Smell it. Every variety has a different and unique aroma. Feel a petal. It feels like silk between your fingers.
Look at the perfect symmetry of the petals. See the pollen in the center. To really experience a rose, you must do all of these things. I had never experienced a rose until 7 years ago. I was that ox, keeping my nose to the grindstone until I was in my mid fifties.
Consider a bird – from the majesty of its beauty in flight to the plumage you can study when it is perched. Hear the songs of the birds. They are all different and can be easily identified from the cheap of a cardinal, to the raucous scream of a jay, to the coo of a dove, and the intricate songs of the mockingbird. Look at the ungainliness of a pelican on land and compare that image with the soaring and swooping magnificent bird gliding just over the waves. Even a buzzard, reviled for its looks and it place in the ecosystem, is beautiful in flight. And despite our revulsion of its “duty”, think what our streets and highways would be like without them. Without scavengers, dead carcasses would be piled up along the sides of the roads.
The horse: a majestic and strong animal, capable of hurting and killing a human yet they bond with us and allow us to lead them around by a piece of string, to ride them and bid them to go where we want even if the horse does not want to go there. And the smell of a horse – a clean, fresh scent of live animal. Touching a horse’s nose and between its front legs feels like the silk of a rose. Soft and velvety.
We used to live in the country, along a river. For a while we kept our horses at home with us and I would come home every evening and ride my horse in the woods and along the river, dodging cypress knees and uprooted trees. We road through miles of undeveloped swampland, often knee deep in water.
When I walked along the river I would take time to hear the bird songs, the soft sound of the slow moving river, sound of small insects and of small animals moving about in the grass. In one particular spot there were 2 oak trees, a cypress and a tree which I could not identify growing out of one root-ball. I would sit and quietly meditate while “seeing” the trees. The smell of the swamp was also present – a musty, earthy smell.
Mershanti – Lover of the Sea
Scuba diving is such an enthralling experience. Everywhere you look on a coral reef, life abounds. Many people ask to see the big things: turtles, rays, midnight parrot fish, sharks, etc., but the tiny things are what attract me the most. To spend 20 minutes with a sea horse is a mystical experience. Soaring in the surge with 3 squid is sublime. Peering under a tiny ledge under a coral mound, you can spot cleaner shrimp who will come out and climb on your hand if you are very still. There are “cleaning stations” where large fish go to have small brightly blue-striped cleaner fish. These little fish go inside the mouths and gills of large fish and clean them of parasites. We came upon a 5’ barracuda getting his face and teeth cleaned. We approached very slowly and he stayed until the cleaning was finished.
Every breath is a part of life, a meditation of breathing in and breathing out, listening and feeling every breath. It is a total escape from life as usual. You float, weightless and soar in the surge as the waves wash over you. You time your breath to the waves and truly become a part of this living sea.
The number of fish and the colors and patterns are truly amazing. You can hover to watch a green moray swim from one lair to another. You can see a pair of angelfish swim side by side. A gang of blue tang, hundred of them, come upon you and swim all around you as they clean the coral of algae. There are large white-spotted eagle rays that fly by as you swim along the reef. They pay us no mind, unless someone chased them. Their giant “wings” move them effortlessly through the water. On a sea mound (an underwater mountain) you see Atlantic spade fish, jacks, and many other varieties of fish in abundance.
From the boat, on the way to a dive site, a pod of dolphin surf the bow wave. One time a pod stopped when the boat captain turned off the engine and we all slipped into the water. The dolphin mimicked our moves, swam between our legs, all around us, playing for over 20 minutes. A truly moving experience as these were wild dolphin, not kept penned up for the amusement of humans, but with humans because they chose to be.
Finally, there are the whale sharks. They are massive, up to 45 feet (longer than our boat). We are like gnats to them. Floating on the surface, watching one swim right by you is an awesome. This is a fish that is longer than a school bus and whose head can be 8 feet wide. Sometimes, a youngster will swim by and stop to look you in the eye. You can almost hear him thinking: “what kind of strange fish are these?” It is a privilege to be in the sea with them and you come away humbled by the experience.
My Journey on the MSA Road
This is a list of how I have progressed along this path. I could wish it were not taken, but I was not given that choice.
It began with a combination of ailments in the late 1990s and has grown gradually over the years. I am fortunate, my MSA is a slow progressor and not an overly avid pitbull. I am afraid I am going to just list these problems and not write prose. I believe it makes more sense that way, and for those not interested in the disease development, they need not tarry here but can skip right on over to the next post.
Late 1990s
• Occasional incontinence (better after surgery)
• Constipation followed by loose stools and fecal incontinence
• Abdominal pain/GERD and UPR
• Blood pressure changes
• Blepheritis/Sjongrens with severe dry eyes and mouth
• Headaches/migraines
• Fatigue
• Choking when swallowing liquids
• Chronic, but intermittent hoarseness
• Balance instability, frequent falls
• Fatigue worsens
• Frequent sighing
• Knocking things over
• Dropping things
• Depression and anxiety
• Body temperature of 97.1-97.5 became normal
• Hyperventilation syndrome
• Extreme muscle pain when performing any exertion
• Vertigo when trying to stand or when leaning over
• Depression worsens – now taking Celexa, Elavil, and Seraquel
• Breathing problems, sometimes gasp for another breath right after a first breath, sometimes run out of breath before I can finish a short sentence of only 3 words (passed 3 PFTs
• LOUD snoring
• Confusion when faced with too many choices
• Difficulty emptying bladder on first try, go again in 20 minutes and empties
• Cane or scooter needed for anything other than very close walks
• Difficulty turning over in bed
• Unable to lie on back, thick mucus blocks my airway
How has MSA affected my life?
For the most part, so far, I am very lucky as I can continue on with what looks like a “normal” life to most people. I can still drive, talk on the phone, walk around the house and far enough to go from a handicapped spot at the grocery to inside for a motorized scooter. I do admit, however, there are a few things that I “feel sorry for myself” over their loss.
Walking along the beach with my husband, holding his hand as my toes dig into the wet sand. Looking for shells and bending over to examine some more closely.
Losing out on the opportunity to climb the cliff dwellings at Bandolier National Monument.
Going to a shopping mall and strolling along stopping at this shop or that one, just looking at things.
Taking a sunrise walk with my dogs through the neighborhood. I would get up at 4:30, walk the dogs until 5 or 5:15, take a shower and be at work by 6 AM. It was beautiful listening to the mockingbirds wake up and sing to the sun.
Walking the trail along a river at a county park where we used to live
Working at “my” library. I miss the people, the easy camaraderie, the ordering of books and other materials, helping people locate information, walking back in the stacks to put my hands on the one book that answers someone’s needs. I admit, I don’t miss the few truly nasty people that one encounters in any public place – people who argue and lie just because they want to get away with breaking the rules.
Working with the City government – the City Manager and other Department Heads. I still have lunch every 2-3 months with one I have known for over 20 years. We sat on many committees together and have become friends, even more so now that I am no longer employed.
The loss of my muscle strength so I am unable to practice yoga as I used to, although I do as much of the stretching and strengthening as I can. The stiffness appears to be winning, however, although I am going to continue fighting it.
I realize that I am very fortunate to not be as far along on this road as some other victims of this disease, and I am grateful for that. I cannot imagine the hardship on the caregivers as the diseases progresses. I have a very tight Advanced Care Directive in order to not put my husband through such an ordeal while he watches me suffer and slip further and further downhill.
• Stiff shoulders – difficult to put on seatbelt
• Stiff knees, elbows, hips
• Difficulty in pulling a shirt over my head
• Difficulty drying myself after a bath
• Intense shoulder and neck pain, resulting in migraines many times, keeps me awake
• Sometimes I can say only one word at a time and speak haltingly. Speech is sometimes jerky, staccato, breathy, irregular, or imprecise
• Hallucinatory nightmares (night terrors), now taking Depakote to treat it
• Wake myself up frequently by talking in my sleep, also sleepwalking
• Diuresis, up every 2 hours every night and every hour or two during the day
• Confusion – difficulty understanding complex instructions, written or verbal
• Difficulty following a series of instructions…or when given too many choices
• Difficulty processing and responding to questions, takes time to answer or respond
• Difficulty urinating when I feel the urge
• Cold feet requiring heavy socks and extra blankets on feet at night
• Problem thinking of dinner, what to fix, when it is time – husband has to remind me and tell me what he wants and then I can fix it
• OH started back up, several occasions “grayed out”, frequent dizziness
• Reading/visual problems, words and letters don’t make sense after a while of reading
• Water and food more frequently gets caught in throat, valve that open and closes for swallong/breathing no longer functions correctly
Travel Now!
This is a long post, the final paragraph is probably the best if you are in a hurry. In fact, I am going to put it here as well to make it easier on those of you who stumble across my blog:
Life is good right now. I can still walk short distances (but will use the wheelchair in the gardens). Although I am having some trouble swallowing and breathing, for the most part I am able to live a somewhat normal life. This is what is called – Living While Dying. Have fun. Enjoy life in all its glory. SEE what I am looking at, FEEL what is touching me, HEAR the songs of birds, SMELL the scent of the flowers. Laugh, love, and, sometimes, cry.
Back in August, 2008, when I finally found a neuro who diagnosed me with MRIs and physical tests of autonomic reactions, etc., she told me that if there were any places I wanted to travel, I should go this year – not wait.
So, here we were. We had traveled to Montreal and back by motorcycle in 1996 but had done nothing but fly to Utila to dive since that time. I thought long and hard and started to prepare my “bucket list”. I came up with 4 things I really wanted to do.
First I wanted to go to Houston to have a reunion with my 7 cousins and their spouses and children. No matter what else I wanted to do that. The reunion was set for Easter weekend. I also wanted to see the Grand Canyon and all the National Parks in Utah, Arizona, and New Mexico. The third place I wanted to see was the Pacific Northwest coastline from Seattle down to at least San Franciso. My final choice was to return to my beloved “spiritual home” of Utila. The land, the people, and the beautiful reefs that we had already been to 16 times. We knew the dive sites better than the divemasters in many cases.
So, what did we do to accomplish some of these goals? We went out and bought a used 24’ motorhome with less than 10,000 miles on it for only $15,000. It was from a foreclosure. We had a motorized lift for my wheelchair installed and my husband had a motorized lift for his BMW motorcycle installed at the back of the vehicle.
Part of our “family”, our cat, Tiki, traveled with us. She had never been anywhere in a vehicle other than to be crated to the vet so we had no idea how she was going to react. She was a trooper, however. During the day, while we were driving she slept on the floor where it was warm between our seats. When we stopped to eat or to walk around at a rest area, she hid under the table on or in her circle scratching post. She HATED the sound of the air brakes of the big trucks at the rest area. We also discovered that she was afraid when she saw the trees moving out the window – trees are definitely NOT supposed to move. So we shut the blinds. We had to take our showers in the RV parks because we had her kitty litter box in the shower! When it was cold in Arizona she became what we called “the lump”. She climbed under the blankets and stayed there until around 2 PM when she would finally venture out.
So we set off for Texas, spending a night with an old friend we had not seen for close to 30 years. It was as if we had just seen him the day before. Special friendships are like that. He lived in Lafayette, Louisiana. The next day we set off for Houston to arrive in Burton, Texas (where my cousins had a 3 ranches). We arrived there in mid-afternoon the Thursday before Easter. Every night we went to a different ranch and we feasted. There was a true chuck-wagon dinner one night and cookouts the other two nights. One of my cousins and her husband have a vineyard, a winery, and some cattle and they had recently bottled their wine and entered it into a contest in South Texas. They won first place. We came home with a case of it. It is good wine. I think I drank too much, however, since with all the meds I take I am not supposed to drink at all. But it was fun and that is what LIVING is all about.
Now, while we were out there anyway, we decided we would also go to the Grand Canyon, and as many other Parks that we could fit in. We spent several days viewing what we could. It snowed in Arizona and we were unable to get to Utah but what we did see was wonderful. The morning we left Flagstaff, it was snowing and 15 degrees out. Brrr. That was when Tiki became the Lump.
In May we flew to Utila. I cried when the plane touched down on the runway. Two of my closest friends live there and since the Utila Lodge, where we stay, has only 8 rooms and we had spent so many weeks there, it is truly a homecoming when we arrive. The staff greets us with hugs and tears. We have seen tragedy and love there and shared so many adventures with them. This year a 7.1 earthquake shook us up at 2:24 AM. It was very frightening as I had never been in an earthquake. It did some damage to the Lodge, which is built out on stilts over the water, and some minor damage to some of the homes. The stores had all their shelving fall over but no one was hurt. A nail store had 8,000 nails on the floor that had to be resorted and put away. I bet it took days to pick them all up! The next morning, while diving, there was another 4.1 earthquake while we were underwater. You could feel/hear the shockwave and the sand lifted up and shot out of the sandchutes in a horizontal line. It was pretty interesting.
In October this year, hurricanes permitting (we live in Florida and don’t want to have a hurricane hit our house while we are gone), we are going on a sculpture garden tour. We are going to revisit Brookgreen Gardens in Myrtle Beach, S.C., then up to Hendersonville, N.C. to see my brother for one night, and on to Georgia to tour the Atlanta Botanical Gardens where Henry Moore’s sculptures are on display. I am really looking forward to it. This time we won’t take Tiki and will have a shower which will be a bit easier.
So, there is my bucket list – the places I intend to see while I can enjoy them. Life is good right now. I can still walk short distances (but will use the wheelchair in the gardens). Although I am having some trouble swallowing and breathing, for the most part I am able to live a somewhat normal life. This is what is called – Living While Dying. Have fun. Enjoy life in all its glory. SEE what I am looking at, FEEL what is touching me, HEAR the songs of birds, SMELL the scent of the flowers. Laugh, love, and, sometimes, cry.
Depression or Sadness?
I have struggled with and suffered from depression and anxiety for my entire life. With the help of the universe’s best clinical psychologist I am finally almost free of childhood trauma, and with the help of some good pharmaceuticals from my psychiatrist I am on an even keel (ain’t drugs good!).
When I first started therapy with my psychologist I had already started the doctor train, as I call it. I had MRIs, C-scans, Ultrasounds, Dopplers, Heart catherization, Right-lung pressure, Urinary Function Test, Pulmonary Function tests, Sleep apnea tests, X-rays, Cameras put down my esophagus and up from my groin to my heart, a tiny computer implanted in my esophagus, and I don’t know what all else. Both my psychologist and my psychiatrist have taken an active role in helping me with coming to terms with MSA. I expect my psychiatrist knows more about MSA than many neuros. He had read up on it on his own and I also take in copies of new journal articles for him. In addition, he keeps track of my many prescriptions, not just his. He cross-checks everything and helps me figure out what does what. My PC also goes over it so I am fortunate.
Both my PC and my psychiatrist are somewhat concerned about liver or kidney damage since all the drugs impact those 2 organs, but all of my blood tests come back OK.
My neuro sent me to my nephrologist to see about my blood pressure. He looked at my month’s worth of taking pressure lying down and standing up and told me not to worry about my blood pressure, that it was not too high to damage my kidney. Go out and enjoy life. He already knew I had MSA and had read an article on it. Before he left the room he said he was not going to have me reschedule but if I ever want to come in and talk to him he would be glad to see me – then he gave me a big hug and an understanding look.
My pulmonologist looked over the results of my PFT and my latest apnea test and said that I slept better without the machine than with it. I gave him a copy of what MSA is and he read it. Then he did the same thing as my nephrologist – he gave me a big hug, an understanding look, and said I don’t have to come back unless I want to. I would always be welcome. Good docs!
What does this have to with depression or sadness? Well, having experienced depression I know what it feels like. When I am in my psychologist’s office what I talk about is mostly sadness and sometimes I “leak” tears. He has said sadness is a very understandable and human emotion when faced with something like MSA. He also has said I have coped with this dreadful disease better than anyone else he could think of. I have kept smiling and laughing (most of the time) and tell people that I am “OK” with it. When I feel myself starting to spiral down from sadness, he has taught me many tools to help bring myself back up. Meditation, imagery, counting breaths, yoga, breathing deeply and letting my breath out slowly, listening to soothing music, etc.
So, I will take sadness over depression any day – and I do know the difference. My favorite, however, is joy of living. Living a life full of friendships, a loving husband/caregiver, a fulfilling career, and at least one social activity out of the house every week. What could be better?
To Tell or Not to Tell – and When?
There have been a lot of posts lately on how people treat those with fatal diseases. Best friends stop calling, people you did not know come through to provide support and assistance, some people feel awkward and don’t know what to say. For the most part, these posts have been for patients who were already at the terminal phase of the disease.
But what about those, like me, who have a slowly progressing disease but are still noticeably disabled in several ways. I talked this problem over with my therapist. But I was not thinking of friends not calling or coming over, I was thinking of people pitying me. I did not want pity. I want them to still see me as “me”. I wanted them to have the knowledge so when my speech slurred, when I could not find a word, when I fell – they would know why and not wonder what was wrong. I chose to tell my staff and the City Manager and told him he was free to forward it on to the rest of the management staff if he saw fit. He did, and I am glad. Since that time, I have told my family and most of my close friends. I made up a letter starting with: “I have MSA” and then explaining what I meant. So far, everyone has been supportive and treated me as they always have. Perhaps because they have been given a long-term understanding and they can observe the deteriorations yet still see me laughing and joining in on conversations, they will not feel any anxiety when the time comes for me to enter Hospice.
My high school is having its 45 reunion next year and I hope to go. I sent the “I have MSA” email to the person in charge with the authority to send it out however she saw fit. By that time, I will almost certainly be in a wheelchair or a scooter. I called a couple I had been close with in high and they said they are going to hold off until the 50th and I had to say I could state that I would not be able to attend that one.
Reading those posts about the loss of old friends when you fall critically ill has made me think about that problem. I hope I don’t have it, but I believe I know quite a few who will be there on a regular basis to sit with me.
SEATING: My Husband and his family (along with whomever else he chooses) and four couples close to us should be seated near my husband
SPECIAL INVITEES: a dozen close friends of mine whom I eat lunch with on a regular basis as well as all of the people I have known over the years with an open invitation to all library users. Also important are people my husband has known from childhood or work. In addition, any of the
people I knew growing up or whom my brother thinks would like to attend
Other: Friends of the Library, Library Board, County Library Director, County computer folks, City Manager and City officials.
FIRST CHOICE: The site where we used to live on the river, with half my ashes spread upriver just before the service (regardless of site, ashes still to be spread from old bridge gazebo along the river)
SECOND CHOICE: The library – either in meeting room or study area down length of building, using sitting areas, seating can be casually arranged with tables
THIRD CHOICE: A park along the river in the City where a gazebo is available for speakers and singers
INTRODUCTORY PRAYER & REMEMBRANCE: by former police chief of City
INTRODUCTION AND FIRST REMEMBRANCE: Past President of Library Board and Friends
HYMN: CLIMB EVERY MOUNTAIN sung by members of the library secretary’s family
HYMN: LET THERE BE PEACE ON EARTH (sung by everyone and members of the above family)
Dreams, Nightmares, Night Terrors…and More
It started on a ranch in Texas where my husband and I were at a reunion with my cousins. We were parked just outside their bedroom so we could be connected to electric hookup. I had gone to bed earlier and my husband joined me an hour or so after. I said good night and went back to sleep. I was awakened by the sound of footsteps outside. I also heard three people talking. A woman told the men that we had guns inside and they should break in, steal the guns, and kill us. I got up and tried to peak out the windows to see them but was unable to find a spot where I could look out and they could not see me. I turned on the outside light and tried to wake up my husband, but every time I woke him up he said there was no one out there and to come back to bed. I got more and more hysterical until he finally got up and shook me and told me to “wake up”. At that time I did but I still declared I had heard people outside. He told me emphatically there had been no one. He had not heard anyone at all. He finally convinced me that it had been just a nightmare with sleep walking and talking but to this day I am sure I heard someone there. I know it was a hallucinatory night terror and since then I have had many more.
I spend most of the night talking, frequently waking up myself and my husband. A number of times I have started fighting the bed and he has had to hold me and reassure me that all is OK. Last night I woke up from a series of terrors that continued on and on so I finally got up and read some while drinking a glass of milk. After that I was able to sleep. I still had plenty of dreams and lots of talking but nothing frightening.
There was one incident about two years prior to the Texas ordeal that is, perhaps, the most terrifying. My husband called out that someone was breaking in and to please slide the gun to him along the hall floor. I moved the pillows, slid open the backboard of the bed, pulled out the gun container, removed the gun, unwrapped it from its oilcloth, reach down to the bottom drawer of the night table and got out a box of shells, and started loading the gun. He heard some noise coming from the bedroom and came back to check and was startled to see what I was doing. I said I was getting the gun ready for him since he told me people were breaking in and he needed it. He came over gently and held me and woke me up and said there was no one there and he had not called out. I find it amazing (and scary) that I could do all of that while asleep.
Last night was one of the worst. The terrors would not stop. I became so frightened I was almost ready to call my psych and ask for some relief. I thought for sure I had lost my mind and had developed schizophrenia (which my mother had had). These dreams are SO REAL that they make reality pale in comparison.
Friday, September 11, 2009
Dreams, Nightmares, Night Terrors…and More
It started on a ranch in Texas where my husband and I were at a reunion with my cousins. We were parked just outside their bedroom so we could be connected to electric hookup. I had gone to bed earlier and my husband joined me an hour or so after. I said good night and went back to sleep. I was awakened by the sound of footsteps outside. I also heard three people talking. A woman told the men that we had guns inside and they should break in, steal the guns, and kill us. I got up and tried to peak out the windows to see them but was unable to find a spot where I could look out and they could not see me. I turned on the outside light and tried to wake up my husband, but every time I woke him up he said there was no one out there and to come back to bed. I got more and more hysterical until he finally got up and shook me and told me to “wake up”. At that time I did but I still declared I had heard people outside. He told me emphatically there had been no one. He had not heard anyone at all. He finally convinced me that it had been just a nightmare with sleep walking and talking but to this day I am sure I heard someone there. I know it was a hallucinatory night terror and since then I have had many more.
I spend most of the night talking, frequently waking up myself and my husband. A number of times I have started fighting the bed and he has had to hold me and reassure me that all is OK. Last night I woke up from a series of terrors that continued on and on so I finally got up and read some while drinking a glass of milk. After that I was able to sleep. I still had plenty of dreams and lots of talking but nothing frightening.
There was one incident about two years prior to the Texas ordeal that is, perhaps, the most terrifying. My husband called out that someone was breaking in and to please slide the gun to him along the hall floor.I moved the pillows, slid open the backboard of the bed, pulled out the gun container, removed the gun, unwrapped it from its oilcloth, reach down to the bottom drawer of the night table and got out a box of shells, and started loading the gun. He heard some noise coming from the bedroom and came back to check and was startled to see what I was doing. I said I was getting the gun ready for him since he told me people were breaking in and he needed it. He came over gently and held me and woke me up and said there was no one there and he had not called out. I find it amazing (and scary) that I could do all of that while asleep.
Last night was one of the worst. The terrors would not stop. I became so frightened I was almost ready to call my psych and ask for some relief. I thought for sure I had lost my mind and had developed schizophrenia (which my mother had had). These dreams are SO REAL that they make reality pale in comparison.
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Random Thoughts & Stray Quotations
These are some personal musings and quotations/truisms gathered over a decade of reading and thinking, not to mention those items sent to me over the Internet.
Is the glass half full or half empty? I say it depends upon whether you are looking down on the glass or up at it. If you are looking down, it is half empty, if you are looking up from the bottom, it is half full.
The universe is blowing – don’t get in the way.
Nothing needs to change in your life situation or the world in order for you to have peace of mind.
THE SENILITY PRAYER:Grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones I do,
and The eyesight to tell the difference.
Always Remember: You don’t stop laughing because you grow old,
You grow old because you stop laughing!!!
When you have come to the edge of all the light you know and are about to step out into the darkness of the unknown, faith is knowing that one of two things will happen: There will be something to stand on, or you will be taught to fly.
Inch by inch, life’s a cinch; yard by yard life is hard
I didn’t have to let the terms of a disease define me – I could redefine the terms. (Michel J. Fox)
Life is uncertain. Eat dessert first. (Ernestine Ulmer)
You never know when a moment and a few sincere words can have an impact on a life. (Zig Ziglar)
Life is all about the moments shared with family and the people you loved that can never be taken away.
A man is but the product of his thoughts. What he thinks, he becomes.
~Mahatma Gandhi
Fear is just a feeling – Fear can never hurt you.
I’ve learned that one of my best traits is that I’m resilient. And I’ve learned that fear is a normal reaction to danger. And I know for certain that panic is the enemy. So I sit where I am and try to keep it together.
(Janet Evanovich)
I BELIEVE (author unknown)
A birth certificate shows that we were born; a death certificate shows that we died; pictures show that we lived!
I believe – That just because two people argue, it doesn’t mean they don’t love each other. And just because they don’t argue, it doesn’t mean they do.
I believe – That we don’t have to change friends if we understand that friends change.
I believe – That no matter how good a friend is, they’re going to hurt you every once in a while and you must forgive them for that.
I believe – That true friendship continues to grow, even over the longest distance. Same goes for true love.
I believe – That you can do something in an instant that will give you heartache for life.
I believe – That it’s taking me a long time to become the person I want to be.
I believe – That you should always leave loved ones with loving words. It may be the last time you see them.
I believe – That you can keep going long after you think you can’t.
I believe – That we are responsible for what we do, no matter how we feel.
I believe – That either you control your attitude or it controls you.
I believe – That heroes are the people who do what has to be done when it needs to be done, regardless of the consequences.
I believe – That money is a lousy way of keeping score.
I believe – That sometimes the people you expect to kick you when you’re down will be the ones to help you get back up.
I believe – That sometimes when I’m angry I have the right to be angry, but that doesn’t give me the right to be cruel.
I believe – That maturity has more to do with what types of experiences you’ve had and what you’ve learned from them and less to do with how many birthdays you’ve celebrated.
I believe – That it isn’t always enough to be forgiven by others. Sometimes you have to learn to forgive yourself.
I believe – That no matter how bad your heart is broken, the world doesn’t stop for your grief.
I believe – That our background and circumstances may have influenced who we are, but we are responsible for who we become.
I believe – Two people can look at the exact same thing and see something totally different.
I believe – That your life can be changed in a matter of hours by people who don’t even know you.
I believe – That even when you think you have no more to give, when a friend cries out to you, you will find the strength to help.
I believe – That credentials on the wall do not make you a decent human being.
I believe – That the people you care about most in life are taken from you too soon.
I believe – That the happiest people don’t necessarily have the best of everything; they just make the best of everything they have.
I had had drilled into me an unflinching attitude toward illness or weakness: Fight it. You can fight it, and you can win. To be weak is to fail; to let down your guard is to surrender; and to give up is to dismiss the power of your own will. (author unknown)
The fundamental flaw in all of this, though, is that it neglects something intrinsic to the complex real world and to complex real human beings. In fact, it is not necessarily true that everything can be conquered with will power. There are forces of nature and circumstance that are beyond our control, let alone our understanding, and to insist on victory in the face of this, to accept nothing less, is just asking for a soul-pummeling. The simple truth is, not every fight can be won. (From The Last Lecture by Pausch)
Computer user error: (from the Internet)
A young lady was having trouble with her computer. So she called the office geek over to her desk. He clicked a couple buttons and solver her problem.
As he was walking away, she asked him, “So, what was wrong?”
He replied, “it was an ID ten T error.” A puzzled expression ran over her face. What’s that…in case I need to fix it again?”
He grinned and said, “Haven’t you ever heard of an ‘ID ten T error’ before?”
“No”, she replied. “Write it down”, he told her, “and I think you’ll figure it out.”
She wrote: ID1OT
What is our purpose for being alive?
I realize this a very deep philosophical question and everyone has his or her own private opinion. Mine, however, probably overlaps with most folks.
I believe first of all, we must “do no harm”. We should neither verbally nor physically abuse and living creature. All of us deserve to be treated with dignity and respect. I feel we should greet everyone we meet or pass by with a smile. Our manner should be welcoming. Now, I realize, that some people have no respect for anyone and these folks need to be watched carefully – but that does not mean they can be abused physically. I have mixed emotions about some criminals and some crimes are so heinous that the perpetrators need to be dealt with firmly and never be allowed to walk out freely into society. This would eliminate the opportunity for them to do the same thing to someone else. Child sexual predators and abusers along with rapists are two such criminals that have lost my ability to think of them with respect. Those who prey on the elderly and who commit premeditated murder are another couple of categories of criminals who should not ever be allowed back in society.
Regarding greeting others with a smile and an open face, I feel that many arguments between people could be avoided if everyone followed that precept. I used to tell my staff at the library to “put steak in your voice”. That is a dog training term and works well with many animals in addition to dogs and people. By this, I mean, speak softly and warmly, always be open to listen to someone else’s story. After all, they would not be telling it if it was not important to them. Librarians are the bartenders for those who do not drink. We hear many stories of divorce, children on drugs, a sick spouse, being evicted from their apartment or losing their job. When someone would come into the library already angry and in a bad mood, they could frequently be diverted by a smile and a “how can I help you?”. It is always easier to avoid a fight than to try to win one. Compromising with others also goes a long way toward soothing tempers.
Serving others is also part of my belief system. Providing love and support to those in need is a high priority. Those caregivers on the Shy-Drager support site for MSA sufferers and caregivers know what I am speaking of. So many have selflessly taken care of sick loved ones, and sometimes sick relatives they did not get along with or care about but they still provide the loving care that is needed. These caregivers KNOW what LIVING is. Living is not only having fun, laughing, and seeing friends, it is also about caring for others while maintaining a sense of humor and treating the sick with respect and dignity. These caregivers deserve our profound thanks for the work they do. I believe it is harder to be a caregiver than it is to be a patient. Bless them all for their dedication to serve.
This is strictly my opinion and I hope I am not stepping on anyone’s toes. This is a very controversial subject.
Death is not an enemy to be feared or fought against. Death is a friend who frees our spirit soul from the physical self that we call “real”.
I was born with only one kidney and suffered numerous kidney infections as a child. In my twenties I learned I had kidney disease and the doctor said, based on the condition of my kidney at that time, I would live to around 64 or 65. In my twenties I also developed Rheumatoid Arthritis. This body I carry around has suffered for 40 years now and my spirit soul is ready to be free to rise up, following the beautiful white light to live in peace and love.
Sometimes, when I am able to get into a deep meditative state, I have seen and been enveloped in that light and there is nothing to fear. I come back, at peace with myself and the world around me. That place of “no thing” is a beautiful place free from anxiety and sadness.
When the therapist’s away…
The last couple of weeks have been very interesting (euphemism) while my therapist was out of the country presenting a program in China. It seems that everything that could go wrong, did.
First, my hair started falling out in clumps as if I had had chemotherapy so I now have several nickel-sized bald places on top of my head. I emailed my therapist a wild note that my hair-dresser had suggested a wig and that “I do not WANT a wig, I want my HAIR”.
Next came an acceleration of MSA symptoms. My muscle weakness grew worse, balance grew worse, vision problems increased, back pain became radically worse, and hips and knees started hurting more intensely. I started using a wedge pillow to raise my head and instead of snoring loudly all night, I would suddenly and very LOUDLY roar out a snore that freaked out the cat and awakened my husband, and stridor became so loud that I woke myself up.
Then, part of a filling came out and I had to go to the dentist to get it drilled out and refilled. Always my favorite past-time!
To top it all off, I woke up one night to the sound of “huck, huck, huck” and jumped (well, inched) out of bed to try to catch the cat before she left the hairball on the carpet. Alas, I was too late, and, since I did not have my glasses on and the room was dark, I stepped in it. Huck, huck, huck, YUCK!
I did meet with my psychiatrist each week while my therapist was gone. He is a psychoanalyst, mostly, and provided me with 2 really good sessions. This gave me plenty of fodder for my first visit back with my therapist today.
Despite all of this, I met with the finance committee for the Friends of the Library Group and provided valuable information. I had my Lunch Bunch outing and had a great time. I read several good books and started reading up on the topic of quantum mechanics, fluid dynamics, consciousness and the nature of reality. I met with an old friend I had known as a library customer for many years and discussed the theory of consciousness and quantum theory at Panera Breads. So, I was a busy little beaver while my therapist was away.
Life before MSA
Back in the 1980’s my husband and I traveled on his BMW from Florida to Montreal three times. We also went to the upper peninsula of Michigan. We had met our Montreal friends on a motorcycle trip when we were waiting for the ferry to Oakracoke on the North Carolina outer banks. They were also on a BMW motorcycle. Thus began a long and enduring friendship. I enjoyed those trips a great deal. Early in 1990, however, I came down with bronchitis on the trip and the new motorcycle my husband had was not as comfortable for me as a passenger, so I decided my long trip days were over.
In the 1970’s we had horses and I would come home from work, throw on my riding clothes and take my horse out for a 30 minute run. What a pleasure to feel the breeze through my hair as we cantered along a dirt trail along a river.
Prior to all of the above, I had always had at least one dog, and frequently two or three. I took a dog training class with a dog I got my second year of college in 1967. I lived in the woods back then with my first husband. That little mutt was one of the most obedient and smartest dog I have ever seen. He had a number of quirks, however. If someone knocked on the door he assumed they were not friends and would go berserk to get at them, so I told my friends to just walk on it. With repairmen, I would get them to hand me their tools and then they could come in and use the tools and when they were finished I would take the toolbelt back outside for them. This dog also knew he was not to beg while we were eating so he would turn his head while drool dripped onto the floor. It was quite a sight!
When he died, I started in with German Shepherds. My first was a lovely white dog with a gentle temperament and children could walk up to her and stick fingers in her eyes and she would never even flinch. She went to sidewalk art shows with us and rode the Seattle bus, curling up under the seat like a guide dog would. She had one major dislike, and that was that no man get within arms reach of me. She would launch herself up toward their throats while I yelled “down, stay” and she would immediately drop down. Then I could hug the person and she would be fine. Good training always pays off. I trained her and three other dogs and walked everyone every day. As one would pass away, I would get another dog and start training again.
In the 1990’s we got Rhodesian Ridgebacks. I consider these dogs to be the finest dogs I have ever had the pleasure to be with. Ultra intelligent and obedient, but with a strong determination for getting whatever they wanted. Our female was raised by a mixed shepherd/Akita dog who loved to lie down in their large water tub. Kali picked up that love and could always be found in the tub. We bought her a plastic kiddie pool and she would spend hours running around the yard and leaping into pool where she would lie down and cool off. She would even put her head under water to retrieve balls. When she was to be spayed, we had to put away the kiddie pool and the large drinking tub so she would not get her stitches wet. Well, we pulled the pool out into the middle of the yard. That night, she decided she was fed up with not having her “bath” so she drug the pool back to where it normally was set up, took the hose from where it was stuck in the fence, and put the hose into the pool. When nothing happened, she tore the pool into little pieces strewn all over the yard.
When we moved into town in 1977, I would take the dogs for a one-half to one mile walk every morning before I went to work. I would get up at 4:30 and we would walk until our route was complete, then I would come in and shower and dress for work. I arrived for work at the library by 6:30.
Our last Ridgeback died in 1996 and I was heartbroken. We went to animal shelters trying to find the dog who belonged with us but no one quite fit. A former acquaintance raised Akitas and suggested we come by and see some he had who needed good homes. Two of the five dogs immediately came to us, a cinnamon female to my husband, and a white male to me. In the end he offered us both of them. We asked how much they would cost (he raised show dogs) but he said he does not sell his pet quality; he only gives them to someone who would provide a good home for them. So now I had two Akitas to walk. They had never had a leash on and had had no training. It was like a rodeo with wild horses at first, but they finally realized that they could not get away and I was not harming them. They came to love their early morning walks. Then I started getting out of breath and overly tired from the walks and the female developed arthritis in her knees. That ended my beloved early morning walks.
I have been thinking of getting another Ridgeback when these lovely and loving dogs pass away (they are already 13). If I am capable, I would train her as a service dog – to pull my wheelchair and to help me get up if I am on the floor, etc. This all depends on how much movement and strength I have at that time. Right now, I am not certain that can be accomplished.
I Had a Dream
Last night I had a strange and wondrous dream. I dreamed of my mother, as I had never seen or experienced her. She was in her twenties and radiantly beautiful, with loving and compassionate eyes. I had never looked her in the eyes before, I had never explored her face with my eyes.
What, you may ask, makes this dream strange? Well, my mother had schizophrenia from the time I was an infant. Even my newborn self knew she could not be trusted and I would not nurse (she told me in my thirties) and would struggle to get away from her. I did not learn she had schizophrenia until I was in my forties and I drove over to see her just before she went into colon surgery. The emotional trauma I experienced in my childhood haunted me until I was in my late fifties. I was always afraid of her and never trusted her. When I spent the night in her apartment, I would lie awake, afraid she would stab me in the night.
In 2004, she was Baker Acted again and that was when I sought therapy. Shortly after she was released, she went into the hospital for tests as her hormone level for ovarian cancer was off the charts. She chose to have surgery, hoping it would cure her, despite my advise to not have the surgery. When they opened her open she entirely eaten up by cancer and all they could do was sew her back up.
The doctors did not tell her what they had found. She asked if they had gotten it all and they did not answer. I had driven over to be with her and when she asked me, I could not lie. I told her the truth and she shoved me away. I understood why and did not hold it against her.
I spent the next two days with her, letting her sip water from a straw, feeding her a teaspoon of ice cream, and just Being with her. I think that was when I discovered I loved her for the first time. I tended her for those two days, and when I left on the second day, I knew she would die and, instead of telling her I would see her “tomorrow” I simply said, “goodbye, I love you.”
The building she was living in for my dream was a beautiful condo on the beach with crashing waves and an inlet of calm water. The entire wall facing the ocean was windows so she could see it from her living room and bedroom. She had always loved the ocean and every time I would drive over to see her, I would take her to an inlet dividing the island and she would sit and watch the waves and the boats going out to fish or the big ships coming into the harbor. This was where she found her peace and her solace. So, seeing her beautiful face for the first time in the surroundings she found so meaningful to her meant even more to me. I can look back in my mind’s eye and see her beautiful eyes, filled with love, looking back at me. She was whole in my dream, not tortured by her mental illness, and she gave of herself fully to me, as I to her. It was a very wondrous dream. I know she is waiting for me when my time comes; waiting for me in the lustrous white light and her kind eyes.
“If I could put time in a bottle”. Those words from a famous song are especially haunting for those of us with MSA. For us, time is of critical importance. Not only concerning how much time is left, but also, if we could go back in time before this horrible disease trapped our brains. Could we possibly do something differently so it would not occur?
If I could go back in time, it would be twenty years ago when I was able to walk two large dogs at 4:30 in the morning and still get to work around 6 AM to start my busy day in my library. I could lift heavy boxes of books all day, run to the back of the 20,000 square foot building to grab a book for someone, pick up a stack of books 16” high and carry them in one arm to the front of the building, unload 3 three foot deep carts containing books being delivered to our library from other libraries. I was a true type A individual, only happy when I was going full steam ahead. In between these activities, I completed all my administrative tasks: preparing and keeping track of the budget, writing reports for the Library Board and the City Manager and reading reviews to order new books. The City Manager finally had to tell me I would have to retire and take disability as he was afraid he was going to find me dead on the floor someday and he was afraid for my life. By then, I could not walk more than five feet without gasping for breath, my legs wooden as I tried to hold on for only a little bit more.
Now, I feel lucky if I can walk 30 feet or if I can pick up the cat, or tuck in the sheet on my side of the bed. One book is about all I can hold (unless they are paperbacks), and I use the motorized carts in the grocery (thank God they have them!). I used to breeze through the grocery in a flash, loading the cart and getting in and out with a full cart. I could take the cart out, unload it into my van, and return the cart to the store. Now, I have someone accompany me to load my van and return the scooter. I don’t remember the grocery even having scooters before I lost my ability to really function.
I frequently wonder what is going to fail on me next. I started having difficulty swallowing food last month and I have to take a swallowing test on Tuesday. I dread it. Food gets “stuck” between my windpipe and my esophagus and I can neither swallow nor breathe until I can force it away from my windpipe with leftover breath in my lungs. Today, I started coughing and choking and gasping for breath while just sitting still. Fortunately, I was with my therapist the first time and he got me some water to soothe my throat. I have had four episodes of that just today.
I started with the night terrors last April and they are truly terrible and terrifying. I start screaming and thrashing and my husband rushes in and holds me and reassures me that it was all a bad dream.
I lost my sense of balance in 2005 when I fell out of chairs, fell while walking, fell while standing, fell while kneeling; you get the picture. I would fall as often as 20 times per day.
None of these things are new to those with MSA. In fact, I am lucky. I can, with the help of medications, walk that 30 feet (sometimes) and, if I am careful, I can swallow (sometimes) without choking. Many of us with MSA cannot do these simple things. Many have feeding tubes in order to absorb nutrition to keep their bodies going. Not to ever be able to savor the taste of food again is a very frightening thought.
People talk about time standing still or time going by so fast. For someone with MSA, unless we are asleep, time creeps by as we wonder if the pain will ease up or what may go wrong with us next. Many times we are left alone with our thoughts and time seems to drag, then a friend comes to visit and time speeds back up. Time has its behavior and we have no control over it. It moves at its own pace, regardless of how we perceive it.
I think of time and of the control it holds over me. And I also think of the control my body has taken away from me. I cannot control time any more than I can control this disease. This disease just is and time just is. And they are what they are. All I can do is observe and try to adjust my focal point away from fear and toward a more positive attitude. I told my therapist I felt like I was on a runaway train that I had no control over and it was heading for a crash. He quietly reassured me it was not going to crash; it was going to gradually slow down until it finally came to a slow stop. Time, for this body, will be over.
Time, Reconsidered
I have been thinking about what I said yesterday that I would go back 20 years to when my body was healthy and whole. Now, I don’t think so. Back then I did not have the serenity and the wisdom I have now. I had not discovered that peace was a possibility for me. Despite this disease I believe I would choose to be who I am today instead of what I was 20 years ago.
Back in my early forties, everything had to be done right now. It had to be done rapidly at warp speed. I could not slow down and smell the roses (I was one who did not see the roses back then). I had never been diving and had not discovered the oneness with the sea. I had not learned to accept myself for who I was instead of what I was. So, all in all, I will stay in my sixties with my MSA and see what the future holds.
Fear makes up a normal response to every persons life. From the fear of the saber toothed tiger to the fear of the unknown. Fears like fear of cancer, fear of unemployment, fear of poverty and homelessness, fear of heart attacks and strokes, fear of diabetes, fear of war. So many real things to be afraid of.
Because of MSA I have learned that I am no longer afraid of some of these things. People say not to reuse plastic bottles as I could get cancer. So? Many people are afraid of so many things that are no longer of importance to me. No more worry about breast cancer or other cancers, no more worry about cholesterol, no more fear of many unknown diseases. Yes, I am concerned about H1N1 but I take reasonable precautions and use hand antibacterial lotion whenever I go anywhere. I also wash my hands repeatedly. I am not saying I have a death wish just because I am no longer going to worry about so many aspects of everyday life. I just know that, from what more than one doctor has said, it is better to die of anything else than letting this disease run the full course.
I have written a very detailed and specific Advanced Care Directive to avoid unnecessary medical intervention. I wear a DNR bracelet with the name of my primary care and my neurologist on it. However, I have been told by several doctors that they do not follow such guidelines and will do everything in their power to keep me alive. I find this strange as I have always thought the doctors have to follow your own directives.
The most common fear is that of death. As I mentioned in an earlier post, death is a friend to be welcomed when life takes a turn for the worst. I believe we have a soul that lives on and that we will be reunited with our loved ones after death. In discussions with my therapist, I have started to believe that even those people who treated us badly and were abusive, will be healed and whole after death and their true loving spirit will be available to us.
Many famous individuals have made statements about death. I am including a few.
One of the most meaningful to many people who suffer from fatal illnesses is by Gilda Radner written shortly before she died, I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious Ambiguity.
Anais Nin wrote, People living deeply have no fear of death.
Amelia Burr writes similarly, Because I have loved life, I shall have no sorrow to die.
Charlotte Perkins Gilman writes, Death? Why this fuss about death. Use your imagination, try to visualize a world without death! … Death is the essential condition of life, not an evil.
John Muir, the famous naturalist, wrote, Let children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed star, and they will learn that death is stingless indeed, and as beautiful as life.
And, finally, a quote by a famous Buddhist, Songyal Rinpoche, …when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.
All of these people, and many thousands of others, have written of a life well lived holds no place for fear of death. Death is a natural occurrence of life. We start dying at the moment of conception.
Think how boring immortality would be. To live forever may be some people’s wish, but I think life holds more excitement, more time for spiritual growth, when we are aware that our span of years in this body is limited. These are a few of the reasons I do not fear death. I fear suffering, but not death. I believe this fear of suffering is common to all people around the globe. So, be not afraid. for fear is the enemy, not death.
BLOG: Tuesday, November 24, 2009
Grief and Loss
This is the hardest thing I have written. It was inspired by the death of a cherished family member, our cat, Tiki. She was like a dog and followed us from room to room, slept under my husband’s chin, and traveled with us in our motor home to the Grand Canyon. She was a very special member of our household, she healed heart wounds, refused to allow arguments to take place, comforted us in sorrow, and always understood what we needed. I know many people think that she was just a cat, but those who have had an extra special relationship with an animal know that they are loved as a family member. The death of Tiki was totally unexpected. We went to bed one Friday night and when I got up Saturday morning, she was lying on the floor near her water, catatonic. We took her to the vet on Monday and learned she had a vertebra that had worked loose and pinched off her spinal cord. She was in pain and her eyes just stared fixated on nothing. Our hearts were broken.
Yesterday, we lost our female Akita. We had a bonded pair of siblings (both spayed and neutered) who had never been separated. Beta had a blood clot in her brain that caused extreme vertigo and an inability to walk. We used a towel to support her so she could use the bathroom. Our vet came out to my van and put her to sleep there, with us holding her. Now her brother is all alone. He is blind and just wanders around trying to find her. He keeps going to the gate waiting for her to return. His grief is every bit as palpable as ours. Both are missed more than I can express
I do not mean to trivialize the death of human loved ones and I am fully aware of the difference, but the grief I feel for our dog and cat is just as deep as the grief I felt for my father, my husband’s father, my mother, my aunt, and three of our best friends in the past 5 years. And we have two other friends undergoing cancer treatment. It is different, but it still leaves an aching empty place inside my heart. I realize that the suffering endured by those who lose a spouse or parent experience a deeper pang of grief, but grief is grief, regardless of the source.
Grief is awful. We all take our own paths and I tend to push mine down and distract myself in order not to feel the pain. Some people can recover in only a few days and some may take a few years. Some, like me, bury it down inside to avoid the pain and then have it turn up later as depression. That is dealing with it without dealing with it. I wish I could cry it out but something always holds me back, even though I know that crying is a very good way to recover. Grieving and crying does not last forever. At some point, the tears will dry up except for special moments, holidays, etc. Odors/aromas can also trigger other bouts of grief. There is an old saying that time heals all wounds but that is only partially true, at least in my experience. Some wounds are so deep that they scab over but under certain circumstances the wound can reopen and grief for that very, very special loved-one can once again overwhelm me. I experience grief as a very profound sadness and I have a difficult time expressing that sadness in tears. The sorrow I feel is always in my mind no matter what I am doing. I admire those who can grieve openly and let it out as much as possible.
One thing that makes grieving easier for me to bury deep inside myself is my sense of spirituality. I do believe our spiritual essence, our soul, if you will, does continue to exist and therefore the loved one is not gone forever. The body is gone, but the spirit lives on within our hearts. Yet, still I experience the sadness, even knowing the loved one lives on inside me. I miss the warmth, the hugs, the comforting words that are shared on a day-to-day basis.
Another type of grieving is anticipatory grief. This is what people feel when their loved one has MSA or other fatal diseases similar to this. The grieving starts while the loved one is still alive and it hurts to watch the beloved slowly die. I believe this situation makes the grieving process much more difficult than in a less protracted illness.
During the month of October, the Shy-Drager online support group suffered through an inordinate number of deaths of loved ones. The grief shared by so many for so many was heart-felt and the love, empathy, and compassion shown by people who have never met each other was truly inspiring. What a wonderful group of people who give their time and energy providing support and comfort for others in need, even as they are also in need. Immediately following the announcement of a death, messages pour in for support to the caregiver and family. This kind of support is, I feel, rare. Most of us have never met and probably never will meet, yet we know each other better than many life-long friends. We pour out our hearts at this site; we ask for help and advice; we ask for information from the caregivers who have been there to assist others long after their loved ones have passed on. In one request for help, a desperate plea, within 10 minutes over 12 individuals responded with their support. I am so glad my neurologist suggested this group as a source of information and support. MSA is a horrible disease, but life can still be lived with modifications given physical limitations. My deep-felt thanks go to each and every member for the comfort they each provide.
Posted by Mershanti at 7:13 PM
Tuesday, December 1, 2009
Is Recovery Possible
On a good note, our remaining Akita, Bear, is already adjusting very well without his sister. He has come out of his mope in the doghouse and now does his rounds in the yard, checking all fence lines and gates. He is enjoying going on short walks with my husband, as well as a couple of very short walks with me. He has not been out for a walk in 3 years since his sister was in too much pain to walk. The other night, he gave one soulful, mourning howl and my husband went out and consoled him with some dog biscuits. After that, he went back to bed and slept through the rest of the night. He repeated the cry again the next night and once again my husband went out to console him.
Today has been awful. I think the loss of Tiki and Beta uncovered a lot of suppressed emotion from past losses and all of the losses of the past few years have brought to a head how much I have needed to let go and mourn. I still hurt from the death of my best friend. I call him my spiritual twin brother. It has been a long time and I still have not recovered from his loss. We were inseparable throughout our lives. I miss him more than I can say. I loved him so much, not romantically, but as the best friend I had ever had. The only person who never turned on me, never criticized me, always supported me against anyone who said anything bad about me. I feel so much guilt that I have carried around since 1988 when I did not go see him at Christmas, 1987. He died on Jan. 18, 1988 on Super Bowl Sunday. I do not think I can ever forgive myself for not going to see him when I was in town. I did not cry for him at the time, either. I have not truly mourned for any of my losses and my heart aches.
He was a genius on the piano and organ and taught himself to play the pipe organ in our church, complete with its three tiered keyboards and a myriad of wooden pedals that had to be operated by stocking feet. We used to go to the church on Thursday after school so he could practice the next week’s music. One week we arrived and found the church locked so we located a window that was not latched and went in to practice. A new youth pastor charged in and accused us of theft and vandalism. We were infuriated, this was our church and what right did he have to deny us entrance. He was only there a short time following that incident. My heart breaks every time I think of my friend, a daily occurrence even after all these years. Is recovery possible? I do not know, but I am hopeful.
There is a huge, aching and bleeding hole in my heart where I have locked up all my grief over lost loved ones. Whenever I have a new loss, I gently pry open the door and toss in the new grief and quickly bar the door so no one can escape.
I read the book, Tear Soup, and it struck a chord with me. I did leak some tears. I may take it to my next therapy session, but I am afraid I will break down and not have time left for my therapist to bring me back to equilibrium.
I need to move on from all this sorrow. I need to get beyond the sadness and depression caused by so much unreleased emotion. I need to free myself from this albatross of unexpressed grief I have hung around my neck. It is hard, though, for me to let go of the rigid control that I maintain on my emotions. I am afraid I will not be able to stop crying once I start. I have to have hope, though. If Bear can recover, so, too, can I.
Posted by Mershanti at 3:43 PM
Time _ and MSA_ have made a change in me
I was in session with my therapist today, talking to him about changes I have noticed in myself, especially during the past 6 months. Despite the losses in my life, right now life looks better than it ever has.
I used to be a self driven Type A personality, always rushing and multitasking. Always busy, never idle, not able to just sit. Speeding from one thing to another. Not just speeding emotionally, but also driving. Hurry, hurry, hurry.
Now, the journey is just as important as the destination. A drive to the library is a pleasure just to be out and see other people. The grocery holds many wonders. New products, old friends, and familiar brands. I just wish they would stop moving things around so you can no longer find what has always been right there, and now is somewhere unknown. But again, the journey takes over while you go in search of the missing item.
In the past, my dreams were of being shipwrecked and without a life vest. I held onto the rope in the hands of my therapist, hoping he could save my life. Now, I dream of swimming in a river with a strong current and know that I can exit the river at any time. I control when to leave the water.
So, as horrible as this disease is, positive things have happened to me because of it. This slow down in life, enjoying the pleasures of everyday things has occurred because life has suddenly become precious. Where I used to want to die, now I find that life is a pleasant place to be. Simple pleasures such as the taste of an apple, watching the river flow by with leaves floating along, the ducks swimming and begging for a handout, the ospreys and their nests, and even the alligators with just their eyes protruding out of the water, all are special to me. I am a nature lover, not a city dweller. I love the woods and the water, and not just underwater diving. I love to sit and watch the water and visit for a spell with a friend. To canoe down the river with friends, even for a couple of hours, brings me enormous pleasure, despite the physical pain that can accompany it.
When I see a path or dirt road leading back into the woods, I want to follow it. I have photos of wood paths on my screensaver slideshow. I want to go down those paths, wander along on the pine needles or oak leaves. Look up at the beautiful sky as seen through the tree canopy. What beauty there is in nature.
Things I used to feel I had to do, or people I had to do something with, no longer matter to me. I do not have to be with people who are negative or appear to try to bring other folks down.
I used to love to rain walk, back when I could walk more than 50 feet or so. I walked our two Rhodesian Ridgebacks in freezing weather, in rain, during hurricanes, and when the county was spraying for citrus canker with the helicopters dropping the poison on me. When that happened, I would hurry the dogs under a tree where we would huddle under the canopy hoping to be missed by most of the poison. They supposedly had posted where they would be spraying every day, but somehow they managed to catch me anyway. We walked at 5 AM so I could get back and be showered and dressed and at work by 6:30. Later, I moved the walk up so I could get to work at 5:45 or 6 AM. Workaholic, Type A, hurry, hurry, hurry.
Now, I am no longer able to work and I sleep until 10:30 or 11 AM every morning. I walk the remaining Akita, Bear, from our yard to next door and back and find that is all I can do. He appreciates even that little. My husband also walks him and spends a great deal of time with him. Without his sister, he is very lonely and appreciates every minute of attention he can get. He is still in mourning, though not as severely as we were afraid he was going to be, at least, not at this time.
You have heard the old saying, is the glass half empty or half full. I contend that it depends on whether you are looking from the bottom up or from the top down. As another saying goes, the devil is in the details.
I still long to return to Utila and revisit my old underwater haunts. To find the seahorses and the squid, to be cleaned by a cleaner shrimp, to marvel at the beauty of nature under the ocean, and, with luck, to once again be in the water with a whale shark. I realize I can no longer swim with one – but to have one pass by me as I float on the surface, to have it look me in the eye curiously as it glides by, would be a completion for me. I have been in the water with a number of them over the years, but it has been a long, dry spell without a sighting. They come and go on their own schedule, not according to our wishes. Another unlikely wish is to be revisited by a pod of dolphin that enjoyed the company of humans. We spent 30 minutes one year with dolphin playing all around us, mimicking our every move, spiraling, leaping, diving, swimming under our arms as long as we did not reach out to touch them. What an unexpected, and awesome, experience. Yes, Utila is number one on my bucket list. I guess it always will be until I draw my last breath.
So, MSA has been a blessing in many ways. To be able to slow down, to write this journal or blog, and to hope to encourage others with MSA that there are positive side effects until the disease grabs them down and will not let them go. To be bedridden and in pain, unable to communicate; those have been my worst nightmares, and I know many on the online support group are there already. Their caregivers communicate for them and for support for themselves as they deal with both grief and the anticipatory grief of losing a loved one, too soon. Until that time comes, I am going to keep on hanging in there and doing as much of what I love as possible. I thank my husband for making many of these loves of mine come to fruition.
Right now, life is good and that is enough.
Tuesday, December 15, 2009
Who Knows Where the Maze Goes
Time, as we know, appears to be very flexible. The more experiences we have (ergo: the older we are) the faster it seems to pass. Children, who have little experience in life, feel that time passes way too slowly, especially waiting for Christmas or birthdays.
Take a lab rat in a maze. At first, the little rat gets let out of his den every morning and runs the maze to where he learns the cheese is. He grabs the cheese and heads back to his den to eat it. The next morning, and the next, he continues going to the cheese door, getting it and taking it ?home?. This is a rather boring routine and time passes very slowly for him, since, after he ate his cheese there was nothing to do and nothing new to think about. Then, one day, the cheese door is closed and he has to learn a new route to locate his cheese. He follows the new route and then suddenly that door is closed and he has to learn yet another path through the maze. Now, it is a big maze so it can take a while to learn the way around.
One morning, the rat got up (now, I know rats are nocturnal, but bear with me) and went outside his den. There was no wall blocking his way. Instead, there was a meadow with grass so he cautiously went in and explored. He had never experienced anything like this, but he decided he really liked it so he spent a few days there, and, every morning his cheese would appear in the meadow with him. Finally, he stepped out of the meadow and next door was a mountain stream and flowers. He liked that, also, so he spent a few days exploring that environment. This went on and on and the rat grew ever more experienced as he learned many new things. Along the way, he met other rats who were also learning new things and they shared ideas and thus learned of even more wonderful experiences that could be enjoyed.
Now time was passing very quickly and he started to age. He found it difficult to get around as much as he wanted and once again time seemed almost to slow down. Then he remembered all his experiences and he had something to think about and once again his sense of time expanded. One day, a young rat came upon him as he lay in the sun, reading a book. The young rat asked what the secret was to making time go faster and the much experienced, older rat, replied that it was experiencing life. The more experiences you try, the faster time seems to go but in fact it is just the opposite. When you grow tired, you have a lifetime of memories to examine to fill your hours. You have hobbies to enjoy, books to read, music to listen to, friends to talk to, and, you have young rats who come for advice and that is good.
Posted by Mershanti at 3:11 PM
The Importance of Learning to Swim
I have given some thought to how my therapist has impacted my life. I (and several friends who also go to him) call him Dr. C, but, beyond that, what role has he played in my life? For a while, he was a father figure. He taught me much of what I should have learned from my father and, for that matter, my mother, and that was a comfort and much appreciated. Now, though, that role has been fulfilled. He is not a friend, though his wife is a good friend of mine. Finally, I decided he is my lifeguard.
When I first started with him (6 years ago in January, 2010) I was a mess emotionally and psychologically. I felt like I had been tossed out of a boat during a hurricane and I was drowning. He would throw me the lifeline but it never quite reached me and I had to reach out for it. Then he would encourage me to pull myself to the boat while he also hauled on the line. This happened week after week, twice a week, for almost 2 years before I found a calm place in the lee of the boat and he taught me how to swim. At that point I went down to once a week visits.
When MSA came calling, the hurricane built up force and, once again, I was thrown into the tempest and once again he threw me the lifeline. Once again, I had to make my way to it and work to be pulled back aboard the boat. Now, after another year or so of twice a week hurricane winds, I am looking for another calm spot in the lee of the boat. This time, my lifeguard is swimming next to me, reassuring me that I can do it. I can cut back to once a week and survive. He has given me the skill to swim and find my way, even in the dark, back to the boat. I am afraid, though, of what will happen if the storm clouds come back in the middle of the week. He tells me he is only a phone call away, and he always returns his phone calls. He also assures me that he will always be there, ready to throw out the lifeline in case I ever need it again.
During the last two months our cat of 15 years died and 3 weeks later our dog of 13 years died. Now our last remaining dog is going through mourning and has the same disease his sister had so we are also living with anticipatory grief. These deaths, on top of the deaths of family members and the family on the Shy-Drager online support group have taken a toll on my swimming ability so I am going to remain a bit longer on twice a week. However, I will decide every Tuesday if I can go a full week without his guidance and cancel my Friday appointment when I feel confident. I believe I will cancel more often than I keep that appointment. That is, unless I get derailed by another fierce blow by MSA or other family difficulties. Our other Akita is the brother of our lost one and so is also 13 years old and in frail health. We feared we would lose him to grief over his sister, but with lots of love and attention from my husband/my caregiver, he is doing well and once again is able to smile. Dr. C carried me through those weeks and got me back into the water to hang onto the lifeline and gradually start swimming again, further and further from the boat.
So, I give honor to him, Dr. C. for being there whenever I needed him and for teaching me to swim well enough to get back to the boat and climb the ladder to safety. What more wonderful gift could one human give another than to provide someone with the tools to learn how to swim not only back to the boat and climb the ladder, but also how swim to shore and safety without the need of a constant lifeline.
By Mershanti
My birth did not come at a very auspicious time. My mother got to the hospital and the doctor was called. He arrived drunk, took up the forceps, and proceeded to rip me out. Then he went back to his party. A short time later, a baby died and he lost his license to practice.
Unbeknownst to me when I was an infant, was that my mother suffered from schizophrenia (actually, I did not learn of that until I was in my late 40s and she was Baker Acted into a mental hospital for the second time). I remember she did read to me when I was young. She also substituted for the librarian at the elementary school and she took me when she went. I took a rug and laid it out over in a corner near the picture books and read and slept the day away. It was wonderful.
When I was 2 we lived in a frame house that we rented while our new house was being built. One night a man lost control of his truck and piled into our house. My brother and I (he is almost 6 years older) slept on a back porch that was enclosed. My crib slid across the room and his bed slid down the far wall. I don’t actually remember the event, but I can remember a feeling of terror. We also owned a cat, Boots, and a dog, Roy Rogers. One day they did not come home for dinner and we found them dead. They had been poisoned by rat poison put down by a neighbor to kill the rats.
Monday, January 18, 2010
When MSA comes Calling, again
I was getting cocky. I had gone one and a half years, ever since I had finally found a neuro who diagnosed me and got me on various medications, including Florinef, Midodrine, Neurontin, and others. Oh, sure, I had fallen back onto couch when trying to get up and had stumbled but always caught myself until. Until Last night when I was sitting at the kitchen table reading a large print book resting on the table. The next thing I knew, I was going down. In a merger of slow and fast motion, my head hit the cabinet, my right elbow hit the table leg, my left arm hit the leg of the cabinet, and both knees were skinned and sore.
My husband came running to ask what had happened and all I could say was that I fell. Up until this point, he had not really grasped what MSA was and how it could suddenly make you fall flat on your face while sitting or standing. We had a good talk about it, then, and now he does understand.
MSA is a sneaky little devil. You can go along and think all is hunky-dory and the next thing you know you are flat on your ass. When I go back to my neuro next month I expect a change in meds.
In addition to the MSA factor, I also recently suffered the third bout of stomach virus in one and a half years. Yes, I had the flu shot, both of them. But I went 30 hours unable to keep any fluids in me. Even a tbs of water took the express route and out, bypassing my kidney. This is bad, for I also suffer from kidney disease and have only one kidney.
Last week, when I was talking with my therapist, I told him I was tired and just ready to give up (I am not always thinking of being positive, I am only human). He said he could totally understand. I was dealing with a lot of hard stuff and it is bound to get me down from time to time. It made me feel so much better. It is a struggle to always be up and positive; sometimes I just want some sympathy for how badly I feel.
So, I am back on track, sorta, waiting to see my neuro. If I keel over again I will call and go in early. It is a very unpleasant feeling to suddenly just fall over or out of a chair. I would rather not do it again.
On Monday, January 25, a change took place in our household. We rescued a 1 year old adult male cat who had been declawed and neutered, of course. His mother had lost her job and could no longer afford to keep him. He spent several weeks in a cage, waiting for someone to take him to a forever home. When we first met him, I was concerned as he seemed to not want much contact, and he was BIG. I had never had such a large cat. I guess I have always had petite females. However, he is magnificent looking. A striking tiger cat, not mackerel but actual stripes like a tiger, only all in a silver gray with darker gray stripes with light tan underbelly and inside his back legs. He is very athletic, agile, and fast; necessarily forcing me to watch where he might be next before I fall over him. He particularly prefers to lie down directly behind me in the kitchen.
His name was Frankie but he is too self-assured and confident to have such a name so we named him Ki, pronounced like key which is a Japanese word for the heart of strength and energy. He is lovable and gradually learning to trust us. He went through a traumatic event in his life, being abandoned and caged after having a home with a dog for a companion. He is alone with us now and we will see how he adjusts to solitary status. Of course, he is the king of the house and made sure he claimed every inch of his territory.
It is amazing how much difference a simple thing like a cat can change your mood from depression to pleasure. We had missed our Tiki, and now we have Ki. Sometimes I find myself calling him Kiki and have to rein myself back in. He adjusted to his new name with no complaint.
I went to the grocery today for some catfood for him and he was so excited when he heard the bags come in. He pranced around the kitchen inspecting every bag and immediately homed in on the catfood bags. I poured some into his bowl and he dove right in. Earlier, I had a yogurt for lunch and when he heard the lid of the yogurt lift up, there he was waiting. He ate 3 teaspoons and then went under his couch for a nap.
What a joy it is to have a warm, fuzzy back in the house. No, he isn’t Tiki and can never take her place, but he is totally himself and has already wormed his way into our hearts. As he has gradually learned to trust us our bond has grown deeper. We think he was not allowed on the beds or the furniture as he has turned down our invitations to come up. In time, he has learned that we welcome his body snuggled next to ours. Welcome home, Ki.
Although he came to us with no manners, he is eager to please and has caught on quite quickly that he is not welcome on our food tables and respectfully removes himself to the hallway until we are finished. His idea, not ours.
March is Multiple System Atrophy Awareness Month
“Miracles For MSA” Proclaims March as Multiple System Atrophy Awareness Month
(FACEBOOK, WORLDWIDE – March 3, 2010) – There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.
Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson’s Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy, or MSA, affects multiple systems of the body. It’s a disease that’s hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.
“Miracles For MSA,” a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler’s Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness was sparked by Bryant’s former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers’ wife suffers from MSA.
“MSA is so rare that many cases are wrongly diagnosed as Parkinson’s or some other similar disease,” said Pam Bower , an active member of the Facebook page, who’s mother-in-law was afflicted with MSA. “My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds.”
Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.
Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.
According to the National Institutes of Health, “Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.”
The group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website,, will be live mid- to late-March.
For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet at
To join the “Miracles for MSA” Facebook page, visit
“Miracles for MSA” is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts. The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.
Saturday, March 6, 2010
Shy Drager online support group mandala
This Mandala was created by Phyllis Wilcox, an active member of the Shy Drager Support Group.MSA Mandala
Bob Summers Hello, Susan and I would like to share an idea with all of you 883 Miracle Fans . Why don’t we use the month of March each year as “Multi Systems Awareness Month”. The first day of Spring falls during this month, a time of renewal or rebirth. It seems to be a fitting time of year to reflex and dream big about our role to promote awareness and raise money for the much needed research. There are Fans on this Miracle page from around the world. There is a saying, “little things make big things happen!” This is one positive thing that we can all do together. We could wear purple ribbons or something that is purple which will bring attention to OUR CAUSE!
I’m for anything that is purple. I found the following meaning for purple:
Purple is the color of good judgment. It is the color of people seeking spiritual fulfillment. It is said if you surround yourself with purple you will have peace of mind. Purple is a good color to use in meditation. Purple has been used to symbolize magic and mystery, as well as royalty. Being the combination of red and blue, the warmest and coolest colors, purple is believed to be the ideal color. Most children love the color purple. Purple is the color most favored by artists. Thursday’s color is purple.
A flower that I think would be good is the Purple Passion flower. One reason is because it a complex flower that is almost alien and that’s how MSA is complex and alien. There is more to this flower then you see. Much like MSA. It is a vine but it’s tendril take hold and it won’t dislodged. It has blotchy purple & white coloration of the coronal filaments . Which remains me of how the brain is becoming with the neurons being attacked. The flower is beautiful , but below it’s surface it is poisonous. Which is how the patient are, they look fine on the outside but the inside is poisoned by MSA.
I had one of these growing on the side of my house. I had to take it out because it was taken over everything much like MSA does
The Yahoo Groups MSA Shy Drager group ended up choosing the Purple Passion Flower after much discussion. One of the members, Phyllis Wilcox,  designed a mandala of the flower. Here is a description of the mandala in Phillis’ words:
Mandalas are used by many cultures to represent the passage of time as cyclical. Examples are that day follows night follows day as the planet turns, and the four seasons repeat as the Earth orbits. The center of the mandala can represent the beginning of life or the heart-center of each person’s spiritual body. Most all life begins with a seed and grows outward from that tiny beginning. Thoughts start as a spark of insight and grow from there and feelings blossom and grow.
In the MSA Passion Flower Mandala art the twelve large purple spikes are the numbers in a clock. The teal triangles are the hours in a day. The white circle is the endless cycle of year following year and the points along the circle are the months. The middle is birth and the turquoise and purple border could be seen as the end of life. All of the shapes and colors in the artwork were taken from the petals of the flower and of course, altered. I used Corel Paintshop Pro to create this art. I really liked the idea someone suggested that it be called a “Compassion Flower.
Ribbons are available from the following source: when you go to the website you go directly to the ribbon chosen.
MSA Awareness magnetic ribbon for automobiles:
Posted by Mershanti at 3:45 PM
Launched not
On February 4, I was getting a rolfing session to loosen up some of my stuck body so I could walk more easily, when my husband mentioned to our rolfer and good friend that we were going to go to Kennedy Space Station to see the last night launch of the space shuttle. My husband asked if he and his wife wanted to ride along since we were going in the RV. They both said a definite YES and he asked if his folks could come along, too. Of course they could. We had known them for over 20 years, also.
So, Saturday afternoon, Feb. 6, we set off with 6 people in our RV designed for 2. We had a good time as we drove over as we are all good friends. We had reserved a spot in an RV park where we were going to sleep until time for the launch, but they suggested we go reconnoiter to see the lay of the land. We drove along US 1 and came to a boat ramp directly opposite the space shuttle launch pad. We could see the shuttle across the Indian River Lagoon. So, instead of going to the RV park, we back into a good spot and visited until about midnight. The launch was set to go up at 4:39 so I set an alarm for 3:15 and around midnight we tried to get some sleep. It was very, very cold that night and we were not really prepared for it so we huddled down as best we could.
When the alarm went off everyone went about making coffee and getting ready for the launch. Preparing cameras, etc. At 4:10 I walked out to the end of the pier to get a good place to watch from where I could sit down. When I saw the parking lot I was amazed; the cars were parked 4 and 5 deep with only a foot between any of them. Everyone was cheerful and having a good time. Some folks had brought lawn chairs and a cooler and were sitting out on another pier next to where I was. Excitement was high as we eagerly awaited the launch. I had never been to one; the other two times we had driven over, it had been scrubbed. Someone with a smart phone kept us up to date about whether or not the launch would go. At 4:29 he announced that the launch had been scrubbed, just ten minutes before go. Disappointed, we went back to the RV and waited for traffic to clear so we could get out. Everything was organized and there were no traffic problems. We decided to drive straight back and skip sleeping at the RV park. We were totally drained when we got back to Tampa around 11 AM on Sunday. No shuttle launch. It was a launch not.
The good part of this story is that the rolfing session enabled me to walk down to that pier without a cane. To move my legs freely for the first time in over a year. Now I am going to schedule an appointment once a month to keep from freezing up as much as I had. Thank God for rolfers!
Rolfed Again
I had another Rolfing session last Thursday. The results of the first, if you read about it, allowed me to walk, albeit with my cane, 2 miles which was a tremendous accomplishment for me. The session took about 2 hours but on Friday I woke up and was free from the pain in my hip that had been there for 20 years and actually was able to walk, unassisted without a limp and without my left heal dragging behind me. On Saturday we ate dinner with our rolfer and his wife (who works hand in hand with him) and even they were amazed how stable I was. I though I would need to sleep more for a day or so as my body adjusts to all the adjustments made to it but I was so well on Friday I did not even take a nap.
Several people asked me about Rolfing when I first mentioned it so I though I would include the address here This is a brief introduction to what Rolfing does.
Rolfing® Structural Integration
A form of hands-on manipulation and movement education developed by Ida P. Rolf over 50 years ago, Rolfing Structural Integration works on the connective tissue (fascia) to release,realign and balance the whole body.
Rolfing Structural Integration enhances your posture and freedom of movement. It is not painful, and may bring dramatic results, including
• injury recovery, including repetitive motion
• pain reduction, including back pain
• stress relief
• increased flexibility
• headache relief
• better balance and ease
Yesterday my husband and I went to a place out of town where there was an older gentleman who sold old bikes. He had a fixer upper trike that we purchased for seventy-five dollars. Our next door neighbor is putting on new tires, a more comfortable seat that was supplied with the purchase, and fixing some other minor problems. I expect later this weekend my husband and I will go out to Flatwoods County Park, a six mile paved loop through the woods for bicycling and skating. The last time we went I rode my scooter but it ran out of battery too fast and my husband was unable to go such a slow speed. I doubt if I go much faster on a trike, but I will turn around after 30 minutes and head back to the truck to sit in the shade and wait for him to finish the course.
Being able to move is such a wonderful thing. I never imagined I would be able to walk so well. Everyone is so amazed. I go in for another session the week before we leave for Utila to go diving. I want to make certain I am in tip top shape for that.
If you live in a city and you want to try getting rolfed, look under either rolfing or massage therapy in your yellow pages. Some phone companies list it differently. Just look for a certified rolfer who has gone through the complete Rolf Institute training, and, preferably, an advanced rolfer and movement specialist. It is worth every penny, and the cost is a pittance compared to the cost of doctors and other treatments.
Have a wonderful weekend and remember to LAUGH.
The Mask
One area I did not get rolfed was my face. I decided my walking ability, and the ability to put my arms up and back were more important. However, the past month I have watched my face steadily take on a fixed image. My mouth no longer smiles and I have what looks like frown lines from the corners of my lips. I did try to force my lips up into a smile as my own form of physical therapy and the pain was immense. I did, however, manage to lift the corner of my left lip ever so slightly.
When I first looked into a mirror and saw my face with the mask, I was shocked. That could not be me! I am a person who has always smiled and laughed and now I looked like an old hag or crone with a bad attitude. I have always avoided looking into mirrors which is why I did not notice the subtle changed in my face any earlier. It hurts to see yourself looking like a completely different person. First I gained 60 pounds from all my meds and then my face changes. I admit, I feel a bit sorry for myself and I cried for a short time, actually I leaked since I don’t ever actually cry. Just tears leaking from my eyes. I had to put a stop to that pity party as quickly as possible as that is not who I want to be.
I am contented with the person inside this skin, even if I am not contented with the outside shell. I guess I just need to remember that, after all, my outside body is just a shell that holds my soul and my self. I just need to remind myself of that when I happen to glance in a mirror.
May peace and health be with you all.
Sometimes I despair
This week I was really in a funk. I was angry at everything and everyone. When I was in session with my therapist I could not express what I felt – I am not certain I even knew at that point what was wrong; only that I was angry, frustrated, and depressed. On the way home I started to cry in my car, and I never cry. I called my therapist and said that I did not know why I had not said anything about how I was feeling or even why I was feeling it but at the end of the message I realized that I did know why I was so upset.
The next day I sent him an email full of anger, saying that, “I hate this #*&%# life and I hate this #*&%# disease. I don’t want to keep living like this and I  lack the courage to do anything about it”. Shocking turn-around for me, for I have been accepting of this disease and not upset about it, I thought.
The next day I went to see my psychiatrist to update my medications and have 40 minutes of therapy. I jumped in with a barrage of words, barely stopping to breathe. This went on for 20 minutes without any hesitation. During that barrage he leaned back and looked like a deer caught in the headlights – where did this person come from? Finally I took a breath and asked if he understood. He sat back up and said he was trying to follow the threads. I asked what threads and he said that, from what he could tell and understand, I wanted my independence. I did not want to be told what to do, or coerced or made to feel guilty for not doing what my loved one wanted me to do. He said that it should be enough for me to simply say that I did not want to do something and have that be the end of it. I was a free person and deserved this basic human right. I should not be labeled as stubborn just because I did not want to do something that I felt would be damaging to this “new normal” body that I now live in.
This echoed what my therapist has been saying for many years, that this is a free country and I have as much right to do what I want and to not do what I don’t want as anyone else.
My stress level kept cranking up and on Saturday it was hard to breathe and my tongue felt swollen in the back of my throat. I went to bed, felt panic attacks coming in waves over me and kept focusing on a visualization from one of my dives. It was a night dive and on the sandy bottom I saw a baby peacock flounder. I slowly edged closer to it and shown my light down I front of it to bring the krill within reach. I lay there in the sand and fed the little flounder and watched it watching me with it’s little eye on an eye stalk. I was so engrossed that suddenly I realized there were no other lights around me, that everyone else was back on the boat. I reluctantly got out of the water and got back on board. This memory calmed my stress end every time the panic returned, I pictured my little flounder and relaxed. Finally, I was able to sleep for 3 hours and awaken refreshed.
I still have the throat and tongue problems today and I need to go back to that peaceful place under the sea and “see what I can see” in my mind’s eye.
Diving once again comes to save me from my anxiety and fill me with peace.
I am looking forward to going back to Utila on Apirl 17 for a week of pure pleace and bliss. Before I go, I will have another rolfing session to help loosen my legs, which have tightened back up again.
May peace be with you and with me. Namaste.
Off to the Dentist
Over the weekend I chipped one of my lower front teeth so Monday morning found me in as an emergency for a fix. It turns out I need a veneer but I was not prepared to sit in the chair with my mouth open for that long. I got a temporary fix instead and the cost of that will go toward the cost of the veneer later.
The problem I discovered almost as soon as I sat down and a technician looked at me was the pain I experienced as soon as I opened my mouth. When my dentist came in to do the repair and I had to keep my mouth open for about 15 minutes my lower job started trembling from the pressure of just keeping my mouth open.
Afterward, my jaw hurt all the way up through my eyes and out my ears. Even all of my teeth hurt, although he had used no anesthetic. I worry how I am going to manage it when I have to keep my mouth open for more than 30-45 minutes for the drilling, molds, etc. to be done. The Parkinson’s part of this disease has really hit me harder than I had thought.
On another note, I had posted a rather negative post over the weekend which I have deleted. I am human, I admit, and I have down days like everyone else, but that one was too down to post. I see my therapist today and will go over it all with him. He responded to my email over the weekend and that helped. I am still not 100 percent back to my cheery, sunshiny self, but I will get there soon as we go to Utila in less than 2 weeks.
One technique I used while I was down was to visualize an experience I had on a night dive in Utila. I found a small, baby peacock flounder who was only about 4 inches long. I shone my light down right in front of him and lay in the sand and watched him eat. His little eye stalks looked from me to his food and he was so cute. I use he as I have no idea how to determine a flounders sex. I lay in the and about a foot away from him where I could study him up close and personal. After about 15 minutes I looked up and realized I was the only person in the water and surfaced back to the boat. I just love those eyeball to eyeball glimpses into another creature’s life.
I just read an interview with Michael J. Fox in the Reader’s Digest. It inspired me and made me feel somewhat embarrassed to let some bad moments interfere with my experiencing life in all its glory. I am glad, though, that I was able to calm myself with something from my diving experience. Those memories and visualizations are an important arsenal in my fight against depression, anxiety, and this disease. Thank you, Michael J. Fox, for your inspiration and your help to fight Parkinson’s Disease, and, hopefully, help us with MSA also get assistance in finding a cure.
Michael J Fox interview
As I mentioned in my previous post, the May, 2010, Reader’s Digest had an interview by Amy Wallace with Michael J. Fox. I was moved beyond belief by his interview. His inspiration has given me hope of further acceptance of this menace that “eats” our brains. I am quoting parts of the interview here with some minor paraphrasing where I have left out parts of a sentence at the beginning of a paragraph. I hope you enjoy it as much as I did and do.
Most of the following are direct quotations from that interview.
Michael J Fox philosophy
I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, “In this moment, I’m struggling and I can’t do what I want to do”, not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.
Let me make this suggestion. Don’t spend a lot of time imagining he worst-case scenario. It rarely goes down as you imagine it well, and if by some fluke it does, you will have lived it twice. When things do go bad, don’t run, don’t hide, it will take time, but you’ll find that even the gravest problems are finite, and your choices are infinite.
There is one basic lesson I’ve learned, it is the cardinal importance of this moment – right now.
At first (when he was first diagnosed at age 30) I went into denial. Refusing to disclose my situation to everyone but family, and covering the symptoms with medication, I was really trying to hide from myself. But with no escape from the disease, its symptoms, and its challenges, I was forced, after exercising in vain all other options, to resort to acceptance, which simply means acknowledging the reality of a situation. As my acceptance grew, I came to understand that loss is not a vacuum. If I didn’t impulsively try to fill the space it creates, it gradually began to fill itself, or at least present choices.
Dealing with frustration
I have come to realize that I no longer tolerate other people trying to coerce me into doing something I do not want to do. It is also frustrating for someone to try to make me feel guilty for my lack of desire to do something or go somewhere. I do not have time to waste on those things.
Yes, I still do things I don’t want to do if I think it benefits the other person in a meaningful way. That is the loving and caring thing to do. I try to live my life without causing harm to any other living being. I am human, however, and have been known to shout at someone when I am frustrated in some way.
In talking with my therapist I have learned that frustration leads to anger and that anger unexpressed leads to depression. Since I have a predisposition to depression, both hereditary, emotional, and physical, I have to watch out.
Last week I was especially frustrated and I needed to release it before I got any worse. I seem to be incapable of yelling, hitting things, etc. so I did the only thing I could think of, I yelled at my therapist by email. I felt sorry afterward and apologized and told him today that I was embarrassed to come back because I had yelled but he said he was glad I had done so. It seems like that may work for me and he does not mind receiving my frustrated, angry, fighting mad emails. After all, they are not directed at him, and, even if they were, it is important for him to know if he has somehow said or done something that has frustrated me.
Today I am much calmer and happier. I have less than two very, very busy weeks before out trip to Utila where all my stress and frustration will evaporate in the beautiful coral reef seas. I am focusing as much of my self as I can on maintaining that image in the front of my mind.
As the song says, Let it Be, and so I shall try.
Back from Utila
We went to Utila again last week. The flight over was brutal and left me drained, confused, and I had trouble with balance and speech. It was what we thought was an endurance trial of 14 hours of airports and planes, despite upgrading to Business Class.
On Sunday, our first true day at Utila Lodge, I prepared to go diving and realized at once that I was not the person I had been last year. I was unable to accomplish climbing the ladder without great pain and loss of breath followed by generalized muscle weakness. I completed the first dive but was so fatigued that I slept through the second one. On that first dive, however, I saw the tiniest lobster I have ever seen; a baby of about half an inch long. I found it quite by accident when I stuck my fingers in front of a small hole in a coral mound so I could have cleaner shrimp climb on my hand to clean me. Instead, I felt a wee bite on my little finger and looked in more closely to see the baby lobster try to taste me for lunch. A wonderful experience.
I am what I call a sand diver. I like to find a nice sand hole in among the coral heads and search for tiny critters to watch and intently study their behavior. Unfortunately, the other 10 divers on the boat liked a different type of diving so I had only a few that allowed me to rest quietly in the sand. As a result, my two alternating dive-buddy divemasters had to do some towing in order for me to follow the group across the coral reefs. My husband took over the duty of keeping me safe and towing me on the last dive day on Thursday. I did see a very large spotted eagle ray swim by in the deep, a young hawksbill turtle, and an enormous green moray eel so the reef dives were certainly not without excitement.
Because of this type of diving, I saw very few little creatures and was unable to fully experience my dives. Being underwater again, however, was wonderful as always. To float effortlessly with no gravity pulling me down, no pain from aching joints, is rejuvenating for me. I guess my buddies did not find it so effortless, but being underwater still beats standing on dry land any day of the week.
I Hate this Frigging Disease
I have entered a state of mind where I have come to hate in all capital letters this frigging disease. I hate seeing how my body slowly deteriorates. I hate looking back at what I used to be able to do and now cannot.
This is a different feeling for me. I had been so tranquil and accepting of the disease. And, in a way, I still am at peace with the knowledge that I am going to live a shorter lifespan than most folks, but I am not at peace with the experience of dying piecemeal. This slow dying process is frustrating and depressing.
Yes, I am overjoyed I can still drive and walk short distances without too much pain or danger of falling. I can still dive with a lot more assistance from other people helping me. It took two men to get me to step on and off the boat. And, despite the type of diving that was chosen by others, I still was measurably more comfortable in the water and was able to really experience the freedom of movement underwater.
Flying was horrible, or, at least, the airport waits were horrible. We live only 2 hours from Utila by plane if we could fly straight from Tampa, but it took us 17 hours to get home. We got up at 4 AM in Utila and arrived home at midnight, exhausted and spent.
I look back at what I could do last year, or even a few months ago, and am struck at what has been lost. Still, I am so very blessed that my disease is progressing slowly. It gives me and my husband time to prepare for what is to come. When I think of those who go from walking to bedridden in only a few months, I know I am so very, very lucky. Not only that, I feel fortunate that I have this disease instead of other, much worse scenarios. Life is much worse for the majority of the world’s population that I feel guilty in even complaining about my own condition, but I am only human.
I hope I have not disappointed any of my followers with my mood of the month, but I feel I must be honest in my humanity. I really do hate this frigging disease.
Tuxedo Cat
About 9 months ago, a small, sleek, young adult Hemingway tuxedo cat came calling on us as we walked in the front yard. He was very friendly and loving, loved getting his tummy rubbed, and had 6 toes on all 4 paws. Since he was well fed and so sleek and healthy, we assumed he belonged to a neighbor. A few months went by with no sign of him and I finally saw him crossing the street in front of a house where the owner had 3 or 4 cats so I assumed he was one of hers. We did not see him in our yard again until 3 weeks ago.
When he meowed to us and rolled over and over, we could see he was thin and disheveled and obviously hungry. So we fed him. He came by every few days when we were outside and we fed him every time. We noticed he was low man on the totem pole to the other tomcats in the neighborhood so he always had to check if the coast was clear. He soon learned our time schedule and would be waiting at our front door when we went out. We started feeding daily in a little dish we put out for him.
We debated some about adopting him; taking him in and getting him neutered and all his shots and bring him inside with our newly acquired neutered male whom we also rescued. When he had first appeared and we figured he belonged to someone, we talked about him some in case he did not but at that time our elderly female cat was ill and the trauma of introducing a new cat into her house was not conceivable.
On Thursday, May 6, I took him in to the vet to give him a health clearance and if all was clear to inoculate him and neuter him. We named him Paws for Papa Hemingway. I also signed a paper that if he had leukemia or feline AIDS than he should be quietly and humanely euthanized so he would not suffer a lingering and painful death.
I received the call that he tested positive for AIDS while I was at the library visiting with a former staff member and I broke down and sobbed. I wrote my dear friend about what had happened and that I did not feel I could call to tell her because it was be too painful for me. I had just spent the afternoon with her the day before and told her all about Paws and how bonded I was with him from the moment I first saw him.
She replied to my email with one of the most moving emails I have ever received. She provided me with comfort and understanding that further cemented our friendship.
We know when we send our love out to mangy, ragged ,or abandoned and lonely, or little or big, and of all assorted colors and meow tones, that we risk losing our hearts, each and every time. And being ill, Paws had your care & attention for however long it took to make his life better. I’ve found myself in that situation many times….sometimes I’m really selfish and keep them around me longer, so I have more time to love them up, and other times, before the attachment really has a chance to turn into cement, I know it’s time to let go. So, you knew it was time to let go. How lucky that he was loved & has someone to remember him. We should all be so lucky.  Peace, S
Sara, Thank you for your comforting and loving words. I knew he would be better off not suffering, even though it meant I would no longer hear his ragged cry and scratch his little white belly. Sometimes you just feel a connection with an animal – like maybe he was a reincarnation or was sent by a former beloved companion. Anyway, I loved him and he was fed and loved every day for the last 2 weeks of his life. As I took him in the crate to the vet, I put my finger in the cage door and he rubbed against it with his snaggly face. I was good to love him and I am a better person for it. Your words made me realize that. Thank you. Mary
Added later in an edited posting
When I came home after hearing the news, I picked up Ki, who is not, by any definition a snuggly cat, and held him in my lap. I asked him if, just this once, he would relax and let me hold me so he could comfort me in my sorrow. He did relax for a few moments and when he got restless I put him down, thanking him.
I have a huge admission of lack of something in my heart. I apologized to Ki for not being able to love him as I had loved Paws. I am ashamed of this feeling, despite my MSA teachings were to allow myself to feel what I feel is OK. But, somehow, this does not feel OK.
Overdoing it
Yesterday, I was feeling really good and walking better than I have in months so I decided to go to the grocery and load up. I took in 4 reusable bags and hopped on the motorized scooter cart. I bought 8 cans of dogfood, milk, 2 big bags of apples, and 5 boxes of cookies and crackers for my husband, and a variety of other stuff. I also stopped and purchased 2 cases of water with 24 bottles in each case. I had to carry these out of the store where I purchased them. When I got home he was busy building a mesh shelter for our dog so I decided to carry everything in by myself. BIG MISTAKE.
Last night I had muscle cramps from top to toe and had to take a muscle relaxant in order to sleep. When I woke up this morning my gait was once again compromised. I was dizzy and my legs felt leaden and did not want to pick up my feet.
I should know by now that I need to ask for help. After all, it is listed in my Things MSA has taught me blog.
I know from past experience that I should not push my body like that. Moderate exercise and carrying objects are good for me, but heavy lifting and walking while carrying heavy objects sets me back and makes me look at myself somewhat critically. I need to be careful with this body; it is the only one I have right now and I am not yet ready to trade it in for a new model.
So, advice to others with MSA type diseases, do not overdo it. Respect your limits and listen to what your body tells you. Ignore the little bird in the mind that says that, of course you can do this now because you used to be able to. This is advice aimed at me. I just need to follow my own advice.
This is an important thing for those of with MSA and our caregivers have to keep reminding ourselves about. Acceptance is just realizing that this is what we have and what we can do and this is what we cannot and then do what we can do with as much joy and pleasure that we can muster.
Granted, we may not be able to change our physical ability, but we can change how we view it. Change the frame around it, as my therapist says. Focus on what can be changed and let go of that which cannot be changed. Emotionally, we do have choices and it is up to us to choose how we look at our disease. How much it limits us or how much it frees us from conventional behavior. Like, I don’t want to go out to dinner with these people, I do not know them well and I am tired, so, choose to say no. If you do not want to be in the presence of someone who is negative or makes you feel uncomfortable, just say no when you might be forced into close contact with that person. I find it very liberating to finally be able to say no without feeling guilty. Time is too short to feel guilty; as is life.
I was treated today to a wonderful experience. A very dear friend of mine is an interior designer and decorator who has a client in Dade City, Florida. This friend raises horses and there were two new three week old colts and I was invited to come up and play with them. No, I cannot ride again, but one of the top things on my bucket list was to hug a horse as I used to have my own horses growing up and in my twenties. Well, I hugged more than one. I rubbed velvety soft noses, felt the smoothness of a foal’s skin, the delightful feel of a mane slipping between my fingers; I was in a state of bliss. I laughed hysterically as my friend drove a gator John Deere all purpose farm vehicle. I had a wet black lab held securely between my legs as we drove along. We had gone to a pond where a Florida Sandhill Crane was nesting and Prissy decided she would like a swim so, of course, she did and since she had arthritis, she needed to ride back in the shotgun seat with me.
It was a completely perfect day forged by friendship with my special friend and now a new friend who is gracious and charming and loves horses as much as I do. I cannot thank my friend enough for taking time out of her busy schedule to provide me with four hours of her time. Not only was she having to go almost straight to a client’s house as soon as we got home, she is also hosting a ninetieth birthday for her husband’s mother this weekend with an expected attendance of 50.
So, bless busy friends who take time to bring pleasure to another person’s world. Life sure is wonderful, isn’t it.
Acceptance Isn’t Surrender
Acceptance isn’t passivity or surrender, but an active engagement in reality, in real time, on its terms. As such, acceptance is realism, a seeing of reality as is, which, of course, requires existential courage rather than an escapist, idealistic flight into what should be.
Accepting the reality as it is now means just that: accepting the reality as it is now! If you don’t like the way reality is right now, change the future – but you first have to accept the present.
You might think: “If I am to accept that at any given time I am doing the best that I can, then how am I to achieve my goals? How am I to improve myself?” The false choice here is this: either accept or change. Acceptance of the fact that at any given time you are doing your practical (not theoretical) best doesn’t mean that you cannot try to improve the next moment. Of course, you can.
Accept and change: accept that at any given moment you are doing the best you can do and, having learned from the experience of this given moment, try to change and improve the next moment to the extent that you can. Automatic, reflexive, on-the-fly perfectionistic rejection of reality as not being good enough triggers a mindless rush to improve it.
Acceptance, that begins with the acknowledgment of what is as being the best that it can be at the given moment, is the beginning of mindful change.
A Tale of Two Tails
I mentioned that on January 27 of this year we rescued a very large neutered male cat whose playmate had been a pit bull. To top it all off, he was declawed and so used his teeth to express his displeasure or playfulness.
Our vet had a brother and sister pair who looked very much like our original cat, Tiki, as well as like Ki. They were feral, one and a half years old, and had not been handled. No one had been willing to give them a chance of life outside a cage and we felt that was just not acceptable so we brought them both home to foster.
The first two days were a trial of try to find a cat as they hid and we pounced to catch them. We finally brought in a large-breed wire dog cage and kept them in the living room where they could get used to us walking around, the TV, dinner, etc.
After three days we opened the cage door and let them choose when to go in and come out. For a few days they still slept on the loft – a board my husband had installed for them to have a higher elevation and provide more space on the floor.
We named them Jazz and Jillie as their names at the vet were Jack and Jillie. Now we have a jazz combo. Ki is the keyboard man, Jazz is the sax man, and Jillie is the diva vocalist.
Watching them come to accept us has been a great distraction from focusing on MSA and my limitations. The other night Jazz climbed onto my husband’s lap, flopped over on his back, and begged to be petted. Last night even shy Jillie jumped on the couch where my husband was sitting and fell asleep.
We still cannot approach them when we are standing up or try to pick them up, but they accept our presence around the house. They are a blessing in disguise. My therapist said that sometimes you don’t get the cat you want, but the cat you need and I think all three of our rescues are that. We are learning so much about ourselves as we learn how to interact with them.
Yoga for Physical Therapy
I started practicing yoga again last week. My first yoga instructor specializes in gentle, therapeutic yoga and is developing a regimen for my specific needs.
The first class consisted of discussing my limitations and abilities. We spent about 30 minutes talking as she took notes. After that, she got out the mats and we started.
We worked on the legs and hips to start with by limbering them up with toe stretches and lifts. After 20 minutes or so we did about 10 minutes with my hands.
That was enough and I told her I had to quit. I should have stopped earlier but I have always been a type A and push myself beyond the limits so I was weak and dizzy. She finished up the exercise with a 10 minutes healing meditation that helped me to once again ground myself.
We discussed future goals and how I need to back off pushing myself to the point of pain and damage and will have shorter sessions from now on. I am not certain if I am going to go weekly or every other week. I think that this combined with my rolfing will add more range of movement and better balance for me.
My husband bought a used bicycle a month or so ago and wanted me to get a trike to ride with him on a beautiful county park with 6 miles of pavement through the woods. I balked at the 400 dollar price tag, however, and every time one appeared on Craigs List it was old in minutes.
Yesterday a truck was idling outside our house and my husband went outside to see what was going on. In the back of the truck was a trike and my husband asked if it was for sale and for how much. He agreed on a price and ran in for me to try it out. I admit after only 3 minutes my legs felt like lead but I have hopes of building up some extra strength by persevering. We ran in the house, well, I hobbled, and were able to pool our cash to buy it. When we came out the man said 2 other people had tried to buy it from him while we were inside but they were kids and wanted to put a boom box in the back and he hates the music the kids play on those so he told them it was already sold, which was the truth.
Now, some evening or early morning, we will go out and ride. If the little slopes are too steep at first I will go as far as I can, turn around and coast down, then go back up. Since this is Florida and in the summer, it has to be either very early or very late. I doubt if my ride lasts more than five to ten minutes at first but I hope to build it up from there.
I am still practicing a bit of yoga each night, especially rolling my shoulders and doing both should and leg stretches and flexibility asanas.
I keep expanding my horizons and keeping my mind focused on strength and health.
Long Time Coming
It has been a very long time since I last wrote. I have been very busy working on the MSA compilation as well as dealing with a lot of grief and some good laughs.
The sadness, other than the loss of our Bear, is the upcoming death of our friend, Willie Waterhouse. He has been our boat captain and more in Utila for many years and is dying of cancer. There is nothing more the doctors can do and he is in pain. We suffer emotionally for him and with him. He is loved by many, especially by us as we go every year and I spend hours with him up in the flying bridge. We talked about everything from politics to education to the sea, mostly the sea and the ecology of nature and how all life is interconnected. We dread the phone call from Honduras, but we will know that he is freed from pain. We pray for him.
Our old Akita, Bear, died in mid June. After 2 weeks we could no longer stand the emptiness without a dog so my husband checked Craigs List, hoping to find a Rhodesian Ridgeback that needed a good home. We were in luck, an ad had been re-posted that day about needing a good home for a Boxer cross Ridgeback. The owner had lost his job in construction and had to give up his 5 acre ranch with horses and cats, and a big, beautiful dog. He had moved into a 1 bedroom apartment and could not keep his beloved dog. We met him that night at a public park and fell in love with Boone. The next day, his owner brought him to our house and watched him play in the yard, meet the Chow next door, and enjoy the experience of running free. We have had him for 3 weeks now and do not know how we could get along without him. The cats were not too certain about him, still aren’t, for that matter, but he just ignores them and their cat food out on the floor. When the heat lessens, we will take him to dog park to play with other dogs. My husband walks him daily to get him out and about and even I have taken him for a walk. He is so big and strong that if I fall in his direction he catches me, and if I fall the other way his leash catches me. The extra exercise is helping me walk better and that is another big plus. Later this week we hope to take him to a dog beach where he can run free and play in the waves on the Gulf (central Florida).
What MSA has taught me
To appreciate the beauty of small things, from a smile to a flower to an insect or a slug.
That even when I am in the darkest places of my soul, a light still shines, even if dimly, until I am ready to open myself to the fullness of light again.
My humanity, my compassion for all living beings, to realize that everyone has a cross to bear and mine is no worse than anyone else’s.
That sleep is a necessity for me to live fully. My body recovers as it sleeps so that, even though it has taken a week, I am finally not as dizzy as I was last week.
Although my progression through MSA is a slower one than some others, I still experience the loss of function and can appreciate what I still have left.
That a connection with people is vital to my soul. I cannot live as a hermit, all alone, cooped in my house. I need friendships and I need to be a friend to others and meet their needs, even if not convenient for me at that time.
That getting angry at the disease is OK. That anger is not a bad thing so long as I express it appropriately and do not harm others with it.
That I do not have to get a mammogram or any other medical procedure if I do not want to.
That I must walk with my head looking straight and slightly down to see where my feet are stepping. If I want to look up, I must stop and place myself. If I want to look to the side, I must stop and turn my body and not just my head. That if there is something, like a truck mirror, is above the level of my eyes, I am going to smack it with my head, and that is OK for I need to look at my feet first.
That I need to provide more love and understanding to everyone I come in contact with, whether I like them or not.
That I do not have to spend time with those who are negative or who express negative emotions of racism or religious intolerance. Yes, I have to provide love and understanding, but I do not have to remain in their presence.
That it is OK to say no.
That it is OK to admit I cannot do something and ask for assistance.
That even a bad dive underwater is better than no dive at all.
That peace and happiness come from within me and not from someone else.
That life, no matter the hardships, is worth living and fighting for.
Long Time Gone while writing MSA book
It has been a long time since I have written anything here. I have been feverishly working on the book: MSA: the Human Side of this Dread Disease. John Morgan, an MSAer in Australia, put together a table of contents for me that will link to the chapters and main points of interest in each chapter. He also added page numbers and found that it was around 1,000 pages and has to be cut by 300 pages. I also had some duplications, which I knew. Now I just have to find them all. I hope to finish it in a month or so and he will help me get it published. I also hope to somehow get it linked online via the website. Pam can help me with that aspect. I am quite excited to be so close to finishing it. I may put it on Amazon with any proceeds going to It is another way to raise awareness for MSA. May you all have a very Happy Thanksgiving tomorrow.
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