Here I go, having to apologize for a long lag between posts....I'm sorry! The past couple of weeks have been pretty busy and I've discovered something... when I "go" for 4 or 5 days in a row without my (3-4 hour) nap, I CRASH. I spent 3 days basically sleeping all day! I have found a level of fatigue that I couldn't have conceived of before. And frankly, it sucks! Oh well, part of the learning-curve. Hopefully, the RT will discover from my BiPAP data card that it is just a matter of tweaking my BiPAP settings and I'll rest better and have more energy during the day. Keep your fingers crossed.
I had my ALS clinic appointment on Tuesday (March 20th). No surprises there (nor did I expect any). My FVC (forced vital capacity) is lower (it was 111% - down from 120% last October and 135% in October 2005)....but still GREAT! I still manage to be "above average"...LOL......over-achiever that I am! My PIP (peak inspiratory pressure) is 50 and that's good too. My shortness of breath is more from airway floppiness and fatigue than muscle failure at this point! :) That is good news!!
On muscle strength I got mostly "4's" on the left side and "5's" on the right (1-5 scale, 5 being the strongest)...so that isn't bad. My reflexes are all still hyperactive (+3 and that won't get better).
I'm having more balance problems over the past month and I'm using a walker when I'm feeling tired, have any distance to walk and can't use a store-provided scooter. On really long treks, like from the Wishard parking garage to Regenstrief building where the clinic is, I use Phillip's old manual wheelchair (someone has to push me most of the time). Still no scooter to be had, but I'm making due pretty well and I'm hoping that I'll get my power chair before summer comes. Of course, then the issue will be that I'll need a wheelchair van, since the power chairs weigh 179 pounds and there won't be any hoisting it manually into the van we have!....no small consideration since I have NO money to put towards a van. But, I'll cross that bridge when I come to it!
I am getting a bath transfer chair to help prevent falls getting in and out of the tub. I've been using the counter next to the tub to hold on to getting in and out, since my balance is off at times, and the physiatrist (physical medicine doctor) and PT think it is time for a transfer chair for fall prevention.
There was talk of my getting fitted for AFO's (leg braces) since they can help not only with balance but also with fatigue, but I'm not sure if I'm ready to take that drastic a step (no pun intended).
My fine motor skills are getting a bit clumsier, again worse on the left, and I got a new "toy" for buttoning (a button hook) that I can use when I feel I need it. In fact, the durable medical equipment rep at clinic gave me a whole CATALOG full of new "toys" I can look forward to (woo hoo). I can't look too far into the future on that, though....hoyer lifts and the like just are too much for me to contemplate!
My neck muscles are also a little weak (good thing I don't have to wear that heavy flight helmet any more I guess *sniff*). Dr. Pascuzzi is concerned that I get a power chair with good head support right from the start.
For those of you who read all this and have no idea what any of this means, the summary is "I still have ALS and it is getting slowly worse with my left side progressing - loosing strength and dexterity - faster than my right. I'm still the same crazy, stubborn and persistent person I was before, though, so not to worry!"