MEMORIAL CELEBRATION

DRESS IS CASUAL – NO SUITS OR TIES, jeans ok

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

LOCATION:

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

NO SERMON: TIME FOR FRIENDS TO PROVIDE ANY REMEMBRANCE THEY WISH

FINAL REMEMBRANCE & BENEDICTION: my brother

HYMN: LET THERE BE PEACE ON EARTH (sung by everyone and members of the above family)

THE REST OF ASHES ARE TO BE SPREAD OUT FROM THE SEA SPRITE AT MY BELOVED UTILA FROM SILVER GARDENS TO LITTLE BIGHT AND STINGRAY POINT

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.

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.

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 50^th 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.

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?

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.

Utila dive trip, day by day summary

Sunday, May 24, 2009 3:09 PM

Somehow I brought the wrong housing for my camera. I may rent one from the dive master on the boat for the rest of the week. It is so wonderful to be back underwater again. Floating and soaring and reaching out to embrace all of the creatures there. My Keeper is a dive instructor from Australia who has only been here one week but has worked in Thailand and other places around the world.

Tuesday, May 26, 2009 2:53 PM

Litle Bight again. Saw 2 seahorses and a conch with his foot and eyes out, crawling in the sand. Martin is the best ever. For my safety stop I just lay in the sand at 15' and enjoyed the moments. Two good sand dives today. I went back to "moon walking" with my hands and it was easier going.

Wednesday, May 27, 2009 9:18 PM

Rented camera, maybe good photos. Banged up - legs weak, tired, shaky. Knee does not want to support me. Diving is great. Great Keeper. Spider bite needs to be cut open and packed with antibiotics. One of those bad spiders. Sunburned. Having a great time. Went to see our dear boat captain, Willy. He has cancer and is off work for several months. His son "little" Willy (4 times the size of his dad) is captain in the meantime. We hope for the best with Willy. Cried together.

Thursday, May 28, 2009 9:28 AM

Last night we had a 7.3 earthquake about 80 miles NE of us. It shifted the Lodge off its pilings a bit and the entire structure now lists eastward. The pier is pulled away from the wall and doors don't want to open. It happened at 2:24 AM (this time CST) and we were up and too stressed to sleep. This morning I ache all over. It was very scary.

Thursday, May 28, 2009 2:04 PM

While we were diving there was another earthquake. We heard the rumbling underwater and saw the sand shifting. Then there was a tremendous amount of sand thrown out of the sand chutes. An interesting day. I feel a nap attacking me for this afternoon so I will skip the afternoon dive (as usual). This was my last dive.

Thursday, May 28, 2009 4:32 PM

Despite earthquakes (including a 4.1 while we were diving) I had a beautiful last dive this morning. I frightened my keeper, without meaning to. I settled down into the sand and felt the ebb and flow of the surge and started timing my breaths with it. I would exhale and my body would surge back towards shore, then I would inhale and my body would flow out toward the sea. I stayed there, meditating totally one with my breath and the sea. After a few minutes Martin, my keeper, came over and asked if I was OK and I said OK He said he was scared that I was very ill. I apologized and said I was just meditating. It was really, really wonderful.

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.

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

2000-2004
? 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

2004-2008
? 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

2009
? 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

Death

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 like 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.

Mershanti - the Sea Lover

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.

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.

Progress notes on coming to terms with life and death

As my therapist says, “how interesting” to see my life from the top of the mountain, from a god’s eye perspective.

I have been climbing up this rocky mountain my entire life. It is strewn with boulders and obstacles that have required me to go over, around, or through in order to keep making headway. Every now and then, at the end of a switchback, I glimpse a peek of what might be on the other side. I have spotted trees, a river, the sea filled with seahorses, squid and many other beautiful and magnificent creatures, I have swum with whalesharks, and I have heard the songs of birds. But as I try to climb over to get to that place where life is wonderful, another obstacle jumps in front of me – but I keep striving. This month, I have finally gotten to a place where I can see where life is worth living. Where there is goodness and joy, friends and a loving husband.

On Friday, I actually said that I have discovered that I want to live, and that threw me into a maelstrom of conflicting emotions. I asked how can I resolve the differences in my life and my doctor told me I don’t have to resolve them. I just need to accept them. Life is complicated. My life has been especially complicated, but I have worked hard to learn to live it with joy.

I have talked of how other people with MSA go to special therapists to try to learn to walk better, or to balance better, or to breathe better. I have done it myself. No, I am not perfect, but I have learned to balance well enough (except for those days I am too dizzy) to walk without fear of falling – I have learned how to catch myself so I don’t fall. I am reprogramming my brain. My therapist doc says I have taken the act of walking out of the brain stem’s automatic pilot and run new neurons around the top of my headin my cerebral cortex so I put “walk” into manual drive where I consciously control it. I have to think about it, watch where I put my feet, be aware of obstacles on the ground in order to not have a misstep, but I concentrate and get it done.

My pulmonologist said once you get hyperventilation syndrome, you can’t get better – except he has heard that those who meditate a lot and/or do yoga, have been able to learn to control that autonomic system. I have done a lot with that. I can slow my breathing (granted, it takes a few minutes if I have had to really struggle physically doing something – but I can do it.)

I still have more growth to work on. The major area of growth to concentrate on now – that I am worthy of anyone’s friendship and respect. That I do not have to listen to old “tapes” from parents about not being good enough, or about being afraid I will be judged by others. That I am not guilty of anything. That seems like a lot (looking at how often I say that I am sorry), but look at how much I have already done. More than I ever believed possible back when I started therapy. My psychiatrist asked me how far I wanted to take my therapy, and I told him, “all the way. As long and as far as I can”. And, I am doing that. I am working. I tried to say how much my herapist has brought me along and he said, “no – you have worked for everything you have gained. He has only been there to guide you.” So, even though there is more to do, I am doing it. To really accomplish changing the life of someone who has climbed that mountain, it takes many years of hard work to accomplish true growth and “rewire” the mind. In intend to change my mind and choose LIFE. To live with joy. To review in my mind, daily, the joyous and loving experiences of my life.

Toward a better understanding of MSA

I have Multiple System Atrophy (MSA). This is a progressive, degenerative, and fatal disease of the brain. At this time it affects multiple areas of my brain including my left cerebellum, my midbrain, my left frontal lobe, and my left temporal lobe. The autonomic system that controls blood pressure, balance, and speech, if the most noticeable.

Some of my symptoms include:

• Balance problems: Falling frequently and unexpectedly
• Vertigo and/or dizziness when standing or walking
• Unable to walk or stand for more than a short period of time
• Hyperventilation during movement
• Muscle weakness
• Inability to look up or to the side when walking, resulting in bumping my head on anything that projects out just above my eyes
• Speech problems, stuttering, unable to speak the words I am thinking
• Hesitation when asked a question as I translate the words
• Choking and swallowing problems, especially when drinking liquids
• Taste and smell differences
• Inco-ordination – knock things over and drop things frequently, writing is difficult
• Muscle stiffness after sitting for more than a short time
• Breathing difficulties

What is the progression of MSA?

Disease progression in MSA is quicker than in Parkinsonism. Almost 80% of patients are disabled within 5 years of onset of the motor symptoms, and only 20% survive past 12 years. The mean survival is roughly 6 years. Rate of progression differs in every case and speed of decline may vary widely in individual patients.

Patients usually have autonomic nervous system dysfunction first. When MSA begins with non-autonomic features, imbalance is the most common feature. This difficulty in maintaining balance may be due to either cerebellar or Parkinsonian abnormalities. Some patients complain of stiffness, clumsiness, or a change in handwriting at the onset of MSA.

MSA progresses over the course of several years to cause more widespread and severe symptoms. Orthostatic hypotension can cause fainting and falls. Loss of coordination, slowed movements, and rigidity can interfere with activities of daily living.

Some patients with MSA have mild loss of cognitive abilities, with impairments in attention and speed of thinking.

Complications include:

Progressive loss of ability to walk or care for self

Difficulty performing daily activities

Injuries from falls/fainting

Side effects of medications

Orthostatic hypotension (a large drop in blood pressure upon standing) is common and may cause dizziness, dimming of vision, head or neck pain, yawning, temporary confusion, slurred speech, and if the hypotension is severe, the patient may "faint" upon arising from a recumbent position.

In spite of low blood pressure while standing, it is common for MSA patients to have high blood pressure when lying down. A fall in blood pressure following meals or in hot weather or following infection is quite common.

The concurrent involvement in MSA of multiple brain systems subserving movement, including the striatum, cerebellum, and cortex, leads to the movement disorder as often being the most profound disability. Hoarseness or even vocal paralysis is relatively common, as are sleep disturbances, including snoring and sleep apnea. The ability to swallow foods and liquids may be impaired.

How long can I expect to live?

The probable outcome is poor. There is a progressive loss of mental and physical functions until general debilitation develops. Early death is likely. The mean survival is roughly 6 years. Most people who are diagnosed with Shy-Drager syndrome die within seven to 10 years after symptoms begin. It is rare for a patient to survive 10 years.

The autonomic abnormalities are seldom the direct cause of death. A significant number of patients develop laryngeal stridor and difficulty swallowing, which can lead to pneumonia.

Pneumonia is the most common cause of death, although irregularities in heartbeat or choking may be responsible for death in some patients. Breathing problems such as aspiration, stridor (high-pitched breathing sounds due to airway obstruction), or cardiopulmonary arrest are common causes of death.

In addition, many patients with MSA experience periodic respiration and in some cases this may lead to a critical loss of respiratory drive, so called Ondine's curse.

Pulmonary hypertension may occur during apnea. The most common causes of death in patients with MSA are pulmonary embolus, apnea, and intercurrent infection.

Treatment

Currently there is no cure for MSA and no known means to slow progression of the disease. A number of drugs can be used to treat the various symptoms of MSA, although they become less effective as the disease progresses.

Learning I had this disorder

This blog will try to explain what it is like living with several severe disabilities for more than 30 years, and with two fatal ones - kidney disease from birth, and MSA for the past 9 years.

It has been a long road of doctors and tests stating 5 years ago as my physical condition deteriorated until I finally had to leave my post as Library Director and go on Social Security Disability. After all the doctors (20 in all) I finally found one who diagnosed me with MSA. What small letters for such a big disorder. To go from a successful Library Director to someone barely able to walk or talk. I took to the Internet and discovered the Shy-Drager Syndrome Yahoo Group where I have learned all I know about this, and other, Parkinsoniasm Plus disorders.