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.

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.

Life in good now

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.

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.

Joy and sorrow

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.

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).

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.

Serendipity

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.

MSA Support Group

Last week there was a question if there was a support group in Tampa. I replied that there wasn’t and then proceeded to create one. In only that week I have set a date, June 26, at three PM at the Temple Terrace Public Library. Now, I have never even been to a support group of any kind and here I am organizing and leading one. I have a flier completed and ready to post at Neurology offices around Tampa and I have notified three other support groups to post our meeting. There will probably be only a few attendees at first, but I hope it will grow. I also will work on finding a better locale for the meetings. I would like to go to a large nursing/assisted living facility or to the College of Medicine Neurology Department at USF.

One of the goals of the group is to expose the residents in the neurology dept. what MSA, PSP, CDB, OPCA, etc. look like and how they impact not just the patient but the families. Perhaps they will pay better attention when someone comes into the clinic with a variety of vague symptoms and think about one of these disorders and save the patient and family a lot of time and money by having to go back and forth from specialist to specialist.

Of course, the main goal, is a place for us to talk and support one another and to learn from each other. It will be a lot of work but I think it will be worth it. As my therapist said, “It’s not as if you do not already have enough to do”. Again, stay active, use my mind, and help others in any way I can.