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
Saturday, March 24, 2007
A Lesson in Sportsmanship
Yesterday Sharyll and I went to Hinkle Fieldhouse at Butler University to watch my 19-year-old autistic son, Phillip, play with his Special Olympics Basketball team and WIN the state semi-finals at 10:00 AM.
At noon, we met a fellow PALS (person with ALS) and new friend, Kent and his wife for lunch. We spent nearly 3 hours talking about all the changes we are experiencing (he is 40 and has two young children).
Then it was back to Butler to watch Phillip's team play in the state championship at 4 PM. It was a VERY exciting game, and I was so proud of Phillip's team and of his wonderful coaches. It was one of the most touching experiences I've ever had. For those of you unfamiliar with Special Olympics (as I was) it isn't quite what you might imagine. In S.O. basketball there must be at least 3 players on the court who are special olympians, while the other two slots may be filled with special olympians or with "partners" (non-disabled peers).
First let me brag on my friend Lisa's son, Cody, who is a Special Olympian and is the KING of the THREE POINT SHOT! I have never seen a kid who loves to shoot three-pointers so much and does it so well! I lost count of the 3-point baskets he made for the team! It was amazing. Now, for those of you who don't know Phillip, just the fact that he can get out on the court (with all that echoing and those buzzers!) and has learned to listen to the coaches' direction is a huge step. Phillip's team has players with a wide range of abilities, ages and sizes... the team captain is a small 10 year old boy with Down's Syndrome who literally beams every second he is playing......his chubby little legs straining to keep him at the same end of the court as the rest of the team. The biggest kid on the team is more than twice as tall as the little guy with Down's and probably 3 times his weight, but they are best buddies. It is inspiring just to watch these kids interact as a supportive group for one another. There are a few "partners" on the team, at least two of which are on the (regular) high school basketball team. All the "partners" are awesome at making sure that they give all the special olympians an opportunity to handle the ball at some point during the game, to the extent that the special olympian is able. And this is no slow-paced gig. These kids run the court and shoot, dribble and guard with all their heart and soul. The finals was won in OVERTIME with a score of 58-54!
What was so amazing to me was the contrast between the two teams that played in the finals. The other team had greater than 1/3 of it's players who were not special olympians. There were always TWO "partners" in the game......always. Several of the team's special olympians never took the court and it was obvious that their "partners" had not been coached to play as a team with the SO's. They pretty much played "for" them. The coach of the other team acted like many "typical coaches", rolling his eyes at the referee's calls, throwing up his hands in disgust when things didn't go "well" and (again) didn't even rotate in all his special olympians.
Despite this, Phillip's team (the Madison County Scotts) played a fair, sportsmanlike and team-oriented game and they WON. In my opinion, they won, regardless of how the score had ended, because they played honorably and with the values that all athletes ("challenged" or NOT) should embody! I was so proud of everyone and I am so grateful for the awesome coaching (two Anderson University Special Ed/Adaptive PE majors). It was great!!!!!
More on why I have no pictures posted yet in my next blog entry...but I'll get some on here soon. Until then, if you know Phillip and see him tell him CONGRATULATIONS! He's not only learned a little basketball but he's been part of a TEAM of WINNERS in the truest sense of the words. Love, Claudia
At noon, we met a fellow PALS (person with ALS) and new friend, Kent and his wife for lunch. We spent nearly 3 hours talking about all the changes we are experiencing (he is 40 and has two young children).
Then it was back to Butler to watch Phillip's team play in the state championship at 4 PM. It was a VERY exciting game, and I was so proud of Phillip's team and of his wonderful coaches. It was one of the most touching experiences I've ever had. For those of you unfamiliar with Special Olympics (as I was) it isn't quite what you might imagine. In S.O. basketball there must be at least 3 players on the court who are special olympians, while the other two slots may be filled with special olympians or with "partners" (non-disabled peers).
First let me brag on my friend Lisa's son, Cody, who is a Special Olympian and is the KING of the THREE POINT SHOT! I have never seen a kid who loves to shoot three-pointers so much and does it so well! I lost count of the 3-point baskets he made for the team! It was amazing. Now, for those of you who don't know Phillip, just the fact that he can get out on the court (with all that echoing and those buzzers!) and has learned to listen to the coaches' direction is a huge step. Phillip's team has players with a wide range of abilities, ages and sizes... the team captain is a small 10 year old boy with Down's Syndrome who literally beams every second he is playing......his chubby little legs straining to keep him at the same end of the court as the rest of the team. The biggest kid on the team is more than twice as tall as the little guy with Down's and probably 3 times his weight, but they are best buddies. It is inspiring just to watch these kids interact as a supportive group for one another. There are a few "partners" on the team, at least two of which are on the (regular) high school basketball team. All the "partners" are awesome at making sure that they give all the special olympians an opportunity to handle the ball at some point during the game, to the extent that the special olympian is able. And this is no slow-paced gig. These kids run the court and shoot, dribble and guard with all their heart and soul. The finals was won in OVERTIME with a score of 58-54!
What was so amazing to me was the contrast between the two teams that played in the finals. The other team had greater than 1/3 of it's players who were not special olympians. There were always TWO "partners" in the game......always. Several of the team's special olympians never took the court and it was obvious that their "partners" had not been coached to play as a team with the SO's. They pretty much played "for" them. The coach of the other team acted like many "typical coaches", rolling his eyes at the referee's calls, throwing up his hands in disgust when things didn't go "well" and (again) didn't even rotate in all his special olympians.
Despite this, Phillip's team (the Madison County Scotts) played a fair, sportsmanlike and team-oriented game and they WON. In my opinion, they won, regardless of how the score had ended, because they played honorably and with the values that all athletes ("challenged" or NOT) should embody! I was so proud of everyone and I am so grateful for the awesome coaching (two Anderson University Special Ed/Adaptive PE majors). It was great!!!!!
More on why I have no pictures posted yet in my next blog entry...but I'll get some on here soon. Until then, if you know Phillip and see him tell him CONGRATULATIONS! He's not only learned a little basketball but he's been part of a TEAM of WINNERS in the truest sense of the words. Love, Claudia
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