First stop was pulmonology, always fun, fun, fun. I like the doctor but I hate the test -- not because the test is difficult, but because I'm afraid of the score. Today, however, we did not take the customary blow test. Today's test involved inhaling through a device that felt small, narrow, and plugged up. Any result of 50 or below and you should start thinking about a bi-pap; the best score is 100. I got a 74. As there is no direct correlation to a forced vital capacity test I am unable to compare this result to the one from three months ago.
Neurology was next, along with the rest of my multidisciplinary team. The revelation that my gait has changed prompted Ellie to closely examine my leg muscles where she noticed increased tone in my left quad. Tone in this instance is not a good thing. Anyway, she's suggested I try using some baclofen which, if I understand correctly, will improve my walk through reducing the tone. I may experience some side effects (drowsiness) so I am starting off on a very small dose. Sigh... another drug. And a drug used to treat a specific ALS issue.
My legs are justifiably yellow.
The visit with Ellen was enjoyable, as always. Lindsey the nutritionist followed, and I was reminded to drink lots and lots and lots of water. I realized today I have not been drinking as much as I should due largely to the fact that it is increasingly difficult to "pull down and pull up." The remedy for this is easy: I just have to wear more bathroom friendly clothing. Oh, when I think of my old clothes...oh well. Those days are gone.
I had lab work done at this point -- difficulty in finding a vein made me queasy and very unhappy. I will not elaborate.
Gwen came in and asked me the usual round of questions -- the questions that go into compiling the FRS score -- and also watched me drink my water since Mona (the speech therapist) was out. I've mentioned before that Gwen always asks the searching questions, looking closely at me as I respond to see if she can identify anything I might be hiding, like depression. Noticing that I had scratched out the psych visit on my board, she asked me why I was opposed to seeing the psychiatrist. Lynne has always wondered this as well. In a nutshell, I don't see how someone can visit with me for 15 minutes every three months and get a handle on how I am doing. It's not that I am opposed; rather, I don't think this schedule is necessary beneficial. Following the double teaming efforts, however, I acquiesced and submitted to my 15 minute visit with a shrink.
She was a very nice young woman who asked me the tough questions (do I think about suicide, etc.), then asked another series of questions to ascertain how I was coping. This led to a discussion on coping techniques which, she allowed, I seemed to have a handle on. It was a painless little session and made everyone happy. Was it beneficial? I will say yes.
Carla and Kay were next. It seemed to me this was the longest of all the visits. My curled and swollen fingers, my swollen ankles and toned quad were all subjects of interest. We discussed finger splints and compression gloves and ankle wraps. Kay and I arranged to meet at her home on Monday night so she could make me some custom finger splints -- isn't that great! I really do have a great team.
Yellow legs. Baclofen. Splints. Psychiatrists. This ALS thing seems to be here for the long term. I certainly felt more like an ALS patient today. There is no denying that change is occurring, no matter how slow and no matter how I try to minimize it.
At one point today the conversation was about running. Running. I think about it quite a lot now that the weather is cooler in the morning. Of all the changes I have experienced this one hurts the most. But I have said that before. I've also said -- and I mean this very sincerely -- at least I can remember how it felt when I did run. After all, tis better to have run and lost than never to have run at all. (I know, cheesy.)
3 days ago