Yesterday was a clinic day. My last visit was in September. The primary purpose for them is to gather data to track disease progression and also to do what they can to help the patient manage the situation. We plan on between 4-5 hours per visit where we meet with a variety of clinic staff. Yesterday we spent time with the nutritionist, the pharmacist, the occupational therapist, the physical therapist, the social worker, a representative from the Muscular Dystrophy Association, the respiratory therapist, someone to draw blood, the clinic nurse & the neurologist.
My main concerns were:
1- Trying to find a medication to stop/lessen the constant muscle twitches and night time muscle cramps so that I can sleep. We talked about different options.
2-My left leg continues to weaken affecting my balance and gait so we looked at a new brace. I'm not fond of my current brace and want to upgrade if I'm going to be using it more often.
3-They will be sending an occupational therapist out to visit our home. She will observe my routine and offer suggestions on methods or equipment to help simplify day to day tasks.
According to the nurse, this neuroscience clinic has between 200-300 ALS patients who come in from 7 different states. In 2007 they diagnosed 40-ish ALS cases. In 2008 they diagnosed around 62 cases. The facility and staff are fantastic. I feel fortunate to be close to this type of resource.
Random notes from the day:
-While walking into the clinic I saw an old man leaning against a parked car smoking a pipe. I wasn't amused that he was lucky enough to get old with a habit like that.
-There were 10 other patients besides me in various rooms. I caught here and there glimpses of different levels of ALS progression. Hmmm is all I have to say.
-Dr. Bromberg is the only neurologist at the clinic who specializes in ALS. He is hoping to have another specialist sooner rather than later. Jeff said if we heard of anyone we would pass the word along and send them his way. Dr. Bromberg had a good laugh over the notion that it would be as easy as passing the word along to your next door neighbor.
-Jeff found a pillow and napped on the examination table between visits while I read a novel. Then he got bored and decided to check his weight on the huge scale (you can roll a wheelchair onto it). Jeff wasn't entirely pleased with the results. So he made a quick trip to the bathroom, emptied his pockets of his phone and some coins, took off his shoes and got back on the scale. He managed to shed a few ounces but still wasn't happy. Having Jeff around makes these visits much more tolerable!
My Saturday 2 weeks ago sums up my physical status. I went snow shoeing with some girlfriends in the morning. But I needed help getting up when I tripped, and they helped carry gear etc. I hate how slow I now am in getting from point A to point B. It drives me nuts. That night we went out for sushi with Shane and Julie. I can no longer hold chopsticks, so I ate my sushi with a fork. My voice is usually fatigued come evening so I limit the songs I sing to my kids. Later we were playing cribbage and I discovered that I can no longer shuffle a deck of cards. We constantly modify for the situation.