Sunday, July 27, 2014

I’m Melting … I’m Melting!

clip_image002No, I’m not melting, but I am shrinking.

It seems like this last year’s wasting is more focused on my arms and shoulders. Yes, there has been wasting in the past, but it is much more noticeable now. I suppose it goes along with my ‘pencil neck’. J

When I look at my arms this morning, they are much ‘more skin than bones’. The skin hangs in certain places where there used to be muscle. I’m certain there is still some muscle there; it is just much more difficult to find.

The good news is my leg strength continues to be good. I am doing the same number of reps in all my standing exercises.

Perhaps it is time to see my physical therapist again. He can evaluate my current capabilities and, if needed, change my arm and shoulder exercises. If you haven’t been evaluated before, I highly recommend it. Just make sure the PT has experience in dealing with Kennedy's Disease or at least progressive neuromuscular conditions.

A couple of questions:
  • Have you noticed more wasting (physical appearance) in certain parts of your body?
  • What has been your experience with physical therapists?

Monday, July 21, 2014

Living with, rather than just surviving

“Attitude is a little thing that makes a big difference”
Winston Churchill 

Anyone that follows my blog knows that I am an advocate of maintaining a positive attitude. In my opinion, ‘living with’, rather than just surviving, Kennedy’s Disease is 90% mental. Quest Magazine published an article, Accentuate the Positive, by Christopher Anselmo, that I recommend. He does an excellent job of showing how he ‘lives with’ his condition.

Mr. Anselmo provides six tips that everyone should note. To wet your appetite, I’ve provided his first tip below.

“1. Figure out what disability will never take away.
With a late-onset disease, you lose the ability to do many things — run, lift heavy objects, climb stairs, eventually even walk. It is impossible from time to time not to dwell on what you have lost. But my biggest regret looking back was wasting time lamenting what I was no longer able to do. Things only began to turn around for me when I took an afternoon and literally wrote a list of what I still could do:
  • I can love.
  • I can laugh.
  • I can make others laugh.
  • I can write.
  • I can go back to school.
  • I can make a difference in the lives of others.
Disability will never take any of this away from me. (What would be on your list?)”

Please, read the article. I know you will find several thoughts worthwhile and worth considering.

Tuesday, July 8, 2014

JAWS – Not the movie

Life is a journey of self-discovery. We might have some limiting issues, but we can usually get around many of them with mobility aids, a regular exercise program, and maintaining a positive attitude.

The other day I was asked a question about jaw problems and Kennedy’s Disease..

“I wonder if you know whether other KD men have experienced problems with jaw alignment? My cousin, who also has Kennedy’s Disease, is having great difficulty eating. He has found it necessary to eat mainly smoothies, since he cannot chew very well.

I suggested he discuss it with his doctors and make sure it was not something else. We tend to blame too much on our condition in part because we can have such different acute symptoms.”
Yes, I have that problem. For me, it started many years ago. It can be very painful and often the only way you can reduce the pain is to push the lower jaw back into its joint. About 15 years ago the pain was bad enough that I had to support my jaw with my palm while eating.

I began an exercise program to help restore the jaw muscle’s strength and it has helped immensely. Nevertheless, it hasn't eliminated the problem entirely.

Something else I found that helps is supporting my jaw when sleeping.

Today, I eat steak, nuts, most anything, including bagels. However, I take smaller bites and chew with an awareness of what I am eating.

“Are those exercises part of the ones you have posted on the KD site or in your recent exercise blogs?”
Yes, some of them are. I do so many exercises these days that I have to think about what is posted and in the guides.

Does he have to hold his jaw in place so it doesn't pop out?

“Yes, even when he is talking.”
Well, everyone is different, and what might help me might not help your cousin. Have him try the following to see if it eases some of the problems:
1. Being aware of when it might happen.
2. Using a pillow for support of the jaw at night.
3. Not eating hard, difficult to chew, foods like bagels, for example.
4. Moving the jaw back and forth exercises the muscles holding it in place.
5. Performing exaggerated winks, and holding them for a count of 3, before moving to the other eye. I do ten winks of each eye at a time, several times a day.

A physical therapist is best qualified to help with this problem. Your cousin’s doctor can recommend one.

How about you? Have you experienced problems with your jaw muscles? What has worked for you to help minimize the issues of dealing with this problem?