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.