In between big games yesterday, Sharyll and I went to Greenwood to have lunch with a new-dear-friend and fellow PALS (person with ALS) and his wife. Kent is 40 years old, and he and his wife have 2 middle-school-age children. We had a LOT to talk about. Kent also has bulbar-onset ALS and was diagnosed this past December. We spent 3 hours talking (I'm sure we were a funny pair to listen to, both of us slurred and slow!!!) and then Sharyll and I went back to Hinkle to watch Phillip's team win the state championship! It was a BIG day!
While I was gone yesterday, the respiratory therapist (RT) from the ALS clinic called. She downloaded the data from my BiPAP data card and was very concerned (according to Amy, who took the message). Evidently I am still having "more than 30 (possibly life-threatening) hypopneas a night"...since I couldn't meet with her yesterday, and because I know how to change the settings on my BiPAP, she instructed me to increase my settings to an IPAP of 18 and an EPAP of 10 (for those of you who have no idea what I'm talking about, lets just say it is now the equivalent of having a blowdryer on "high/cool" blowing in my nose all night long!). I will meet with her on Monday and will probably need to go to a BiPAP machine that has a rate setting to force breaths for when my body doesn't do it on it's own. With the settings how they are, when I get fully relaxed and my mouth and jaw relax, the air BLOWS MY MOUTH OPEN! LOL.
Today, I have had my worst day yet in terms of weakness, balance and fatigue. I slept until 11 AM, got up and ate and was back in bed at 1 PM. I got up at 2:30 and decided to get a shower and try to do some stuff (you know, have a life), but I found that in the shower I barely had the strength to hold my hands above my shoulders (which, by the way, does make washing your hair a bit of a challenge). Then there was the fact that I felt like I was about to fall over the entire time, and I needed to shave my legs (aren't we women lucky!). There was NO WAY I was going to be able to balance on one leg with the other up on the edge of the tub to shave, so I tried sitting on the side and kept feeling like my feet were still slipping out from under me (and like my butt was soon going to be where my feet were)...so I ended up doing a "quick and dirty" job with both feet flat on the floor of the tub, holding on for dear life to the counter-edge when I finally finished and had to step over the side of the tub. No primping today... I was lucky that my hair dries very quickly or it would've just had to stay wet! And I had to sit on the toilet while drying my hair at that!
The sum-total of my daily accomplishments is negligible, and all that I was able to do was done with arms and legs filled with lead-blood, slurred speech and virtually no "projection" of my voice. Just "payin' the piper"!
TOO MUCH EXCITEMENT yesterday! ;-)
Tomorrow will be better....Until then..... Love, Claudia