Thursday, May 16, 2013

Today's adventure...

Displayed at Las Olas Massage and Wellness
Today I attended the Mayo ALS Clinic. This happens about every 6-months and each time it comes up, I debate with myself if it is something I really want to do.  So far, I have attended each one and I have always been happy that I have gone. 

How it works is that my husband and I sit in one room while the staff rotates in and out throughout the morning.  I see a speech therapist, a nutritionist, a social worker and representative from the ALSA, a respiratory therapist, an occupational therapist, a physical therapist, and, of course, my neurologist.  In addition to all these visits, I am given a cognitive test which is usually the most (only) entertaining part of the testing. 

During the cognitive test, I have to write as many words as I can think of, in the time allotted, starting with the letter given but I cannot use people, places, or numbers.  The letter was "F" and profanity was not mentioned in the words I couldn't use so here are some of the words I wrote:  fun, full, far, fountain, fart, foot, from, fuck, fly, food...  Sometimes, you just gotta humor yourself.

Although I stay in the same room, I find I am exhausted by the end of it all.

Some of the highlights today include a plan to improve range of motion in my left arm which should ultimately help reduce some of the pain there, learning that my respiratory function is remaining steady (a plus), and an informative Q and A with my neurologist who is very knowledgeable and matter-of-fact, which I appreciate. 

Today I also came home with a Tobii P10 eye-tracking device thanks to Mayo and the ALSA.  It is an older device, definitely not portable as it is heavy and must be mounted on a stand for ease of use, but awesome to test and see if the technology is something that can work for me in the future should the need arise.  I was able to plug it in and use it right away which, to me, means it is user friendly.  First, I played a game of Tic-Tac-Toe ("The only winning move is not to play" -Joshua...can you name the movie?) and then Eye Chess ("Wouldn't you prefer a nice game of chess?" -Joshua...hint, it was released in 1983).  Now that I have it at home, we will test it out and see how much it can do...beyond the games.  I'll keep you posted.

The best part of Clinic:  seeing my friend who I met at my first clinic visit about a year ago.  She is also living with Bulbar onset ALS and is in her 40s.  We stay in touch between visits by email because we live hours apart.  You will learn more about her soon so stay tuned...

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