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.

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 Exercise Video

I received an MSA Exercise video from Gene Rechsteiner this week. He has a physical therapist, Kathy Pistoreal who has designed an exercise program to help his balance and range of motion. From what his wife has said, it has really helped him and Kathy anticipates possible problems and heads them off before they get in the way of his program.

If anyone would like a copy of the DVD Cindy, his wife, will send you one free with the caveat that you make a donation to the MSA Shy-Drager Support Group. I am going to take a copy to my rolfer as well as to my yoga instructor for them to get some additional tips in helping me.

Life is wonderful how it provides us with the information we need before we even know we need it. The universe is unfolding as it should and all is well.

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.

TIME

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.