The Worst Patient in the World

I have only been physically disabled a few times in my life, and the memories of each occasion still haunt me. The first time I had that experience was when I was pregnant. With each of my daughters, I was so sick during pregnancy that I was often called “an invalid,” usually by my husband. Both of our offspring stayed in the womb so long they were overdue. I didn’t glow, I didn’t have wonderful food cravings – I just wanted it to end! And each time, had unbearably long labors, followed by C-sections. My eldest daughter just had a similar pregnancy experience, and I “felt her pain” every time we spoke. I am proud, though, that she was a better patient than I was! Having surgery, complete with staples-two-ways, for the delivery of each daughter put me in a whole new realm of disability! Although I was young then, the details of the C-section delivery left me in lots of agony. But, both times, I foolishly couldn’t wait to leave the hospital! I couldn’t stand the idea of having someone take care of me!

The next time I suffered an injury was a minor one – but it was very inconvenient for an organist to have a broken wrist, especially since it happened when my second daughter was very young. Having a cast on my left arm, not being able to take a bath or wash my hair by myself, left me very frustrated! I had to find music for the right hand only to play for church. Once again, I couldn’t wait to get that cast off! 

About ten years ago, just after learning that I had HD, I suffered an injury while working at Esperanza. I fell off the stage, and broke my left knee and my right ankle. Not wanting to worry the clients there (by calling an ambulance), I tried to walk to a waiting mini-bus for a ride to the immediate care center. That was one painful journey! When I learned the extent of my injuries, I had to leave work for a minimum of two weeks, so that a claim could be made for Workers Compensation. Once again, I was the worst patient in the world, trying to keep working even though I was broken! At home, my husband borrowed a wheelchair for me to make trips up and down the hall. It was that same wheelchair that we brought to our oldest daughter’s college graduation. We all vividly remember being ushered to the handicapped section of Krannert Center at U of I – with my elderly mother-in-law pushing me! We did have the best seat in the house.

Being unable to walk really wreaked havoc with my exercise plans! During this time of being an invalid, I found an exercise VHS called Chair Dancing. Buying things online was a little more difficult ten years ago, but I was so delighted to find that tape! Some of it was too difficult for me at first, but as my bones healed, I tried to keep my muscles limber by doing parts of the exercises each day. 

I dread the day when I truly become an invalid, knowing that I am truly the worst patient in the world. What will it mean for my loved ones? Will they have difficult decisions to make? How will I respond to them? 

The reason I illustrated this blog with a picture of a Chair Dancing video is that I still use those videos, and many of the newer versions (Chair Dancing Through the Decades, Life's a Celebration, Sit Down and Tone Up, and many more)! The Alzheimer's patients that I work with each week love doing chair dancing! I've gotten some great movements from those videos, and often make my own list of songs for each new "Circle Dance." Hopefully, if and when I am confined to a wheelchair again, I'll be in the mood to chair dance! 

Brain Fitness

 

Here are a few exercises for practicing brain fitness:

First, think of as many words as you can that start with a certain letter (like “F”). At first this is difficult, but as you become more experienced, you can learn to “let you mind go” and easily and come up with a whole dictionary of words! 

Another exercise that is always does by neurologists is the Luria manual sequencing task, in which one is asked to tap the table with a fist, open palm, and side of open hand and then to repeat the sequence as quickly as possible. Try practicing this when seated at a table, or on your leg.

When I was teaching, I used my walking/biking time to sing scales (hopefully not too loudly!)! Not only did I vocalize, but I also practiced and learned new modal scales (like Lydian, Dorian, etc.!). Exercise time is a great time to rehearse memorizations from the past, like the poetry you were forced to learn in high school. It comes back very easily for most people.

There are many tests, both on computer and with pencil and paper, that I do when I go to my annual clinical study visits. They include an exercise that has you look at a list of colors and names like the one above, and decide if the meaning of the color matches the ink color. There is also a written test where you practice sequencing of numbers, letters, and a combination of both.      

Last week, I signed up for Lumosity, which is an app for my I-phone. I tried it for free for a week, and I got so much from it that I signed up for a one-year subscription, at a very modest fee. It has many challenging games, similar to the ones I have done as part of neurological exams, but it keeps track of my progress, and is a great program. I recommend it highly. I have been using Lumosity for more than a year, and my scores are improving!