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
Friday, March 23, 2007
STATE CHAMPIONS!!!!!!!!!!!
Phillip's Special Olympics Basketball Team WON the STATE CHAMPIONSHIP at Hinkle Fieldhouse today in overtime!!!! I am exhausted but it was worth every minute! I'll post pictures and maybe some video soon, but I just had to let the world know about this great day!
Thursday, March 22, 2007
My ALS Clinic Visit March 20th
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!"
Love, Claudia
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!"
Love, Claudia
Thursday, March 15, 2007
Invisible People
March 10, 2007 - Spring is trying to come to Indiana. Right now, at 5:30 PM it is 53 degrees with a light wind. Earlier, while breezy, the sun was shining and it was rather pleasant outside. Phillip is here today and earlier, Amy, the boys and I had a "picnic" lunch out on the back patio. Nothing fancy, but we breathed some fresh air and saw a little sun. After we finished our PB&J's, the soccer ball came out and (with significant grumbling from Phillip) we "kicked" it around. I was pretty proud of myself...actually got up and walked around in the yard a little and even kicked the ball once or twice...then I got ambitious and Christopher and I went around to the front of the house...the flower bed in front was full of dead foliage from last fall, and I began to pull up some of the easier-to-pursuade detritus. It wasn't long though, before I was feeling like I just couldn't keep standing up without leaning on something. At first I tried the rake that I had grabbed to help clear the flower bed of the 'junk', but I immediately realized that rakes aren't much help when you want to "lean".
On Thursday (the 8th) I went to see my friends Judy and Tim at Riley for my wheelchair fitting. As always it was a pleasure to see them (Judy is an OT who specializes in wheelchair fitting and Tim, well, he's the "tool man" ... or as I like to call him.. the MIRACLE worker when it comes to wheelchair adjustments and modifications!). Anyhow, while I was there Tim gifted me with a walker that had been "longing for a home" for quite some time. TODAY, I gave the walker it's first "test"...there in the front yard, I was leaning on the walker and trying to "particpate" in the yard work. Now, suffice it to say that it isn't easy to get much done with Phillip and Christopher "helping" on a GOOD day...and I quickly realized that I had bitten off more than I could chew. Amy was great to jump in and "pursuade" Phillip to help with gathering the dead foliage. Christopher was content (for about 3 mintues) to just walk with me (and my walker) down the sidewalk. Eventually, even this was too tiring for me (we made it past the distant property-line of the house next door!) and I "sat" while Christopher chopped on and dug at the only remaining pile of "snow" (more like dirty ice pellets) obscuring the sidewalk. While we were enjoying our outdoor activities, several of our neighbors were coming and going.
Mind you, we live in a nice, suburban neighborhood, full of young families with the 1.3 children and the 2.4 cars they're supposed to have. Last evening (yesterday was warmer than today) there were probably 15 children (ages 1-10) and 8 adults in the street, gathered together just enjoying being outside for the first time in months. By that time of day (6 PM) though, our day is "over"....Christopher is in near-to-full meltdown mode from fatigue (and so are we!) so all I could do was watch the social gathering from my window with envy.
Today, as the neighbors passed by our home...with my "family" all outside, all I saw was averted gazes. We were "invisible"...in this "friendly" neighborhood where everyone waves at everyone else when they drive by...there were no waves, no greetings, not even any curious stares. I'm not sure why we were "invisible" today, although I have my suspicions. And, yes, it was obviously an intentional act on our neighbors' part to ignore us.
My suspicion is that we were "invisible" because we are "different". Maybe they think Amy and I (two adult women living in the same house) are gay (although I doubt they think that about the two young-adult men who rent the house next to us on the south)...maybe it was "all those disabilities" (two obviously mentally "challenged" boys and a woman who "looks fine" but talks like a drunk and uses a walker).
Regardless of the "why" I can tell you that it bugged me. Next time you see someone "different" I hope that YOU just take a second to share a quick but sincere smile. It is amazing what that simple act means. Love, Claudia
On Thursday (the 8th) I went to see my friends Judy and Tim at Riley for my wheelchair fitting. As always it was a pleasure to see them (Judy is an OT who specializes in wheelchair fitting and Tim, well, he's the "tool man" ... or as I like to call him.. the MIRACLE worker when it comes to wheelchair adjustments and modifications!). Anyhow, while I was there Tim gifted me with a walker that had been "longing for a home" for quite some time. TODAY, I gave the walker it's first "test"...there in the front yard, I was leaning on the walker and trying to "particpate" in the yard work. Now, suffice it to say that it isn't easy to get much done with Phillip and Christopher "helping" on a GOOD day...and I quickly realized that I had bitten off more than I could chew. Amy was great to jump in and "pursuade" Phillip to help with gathering the dead foliage. Christopher was content (for about 3 mintues) to just walk with me (and my walker) down the sidewalk. Eventually, even this was too tiring for me (we made it past the distant property-line of the house next door!) and I "sat" while Christopher chopped on and dug at the only remaining pile of "snow" (more like dirty ice pellets) obscuring the sidewalk. While we were enjoying our outdoor activities, several of our neighbors were coming and going.
Mind you, we live in a nice, suburban neighborhood, full of young families with the 1.3 children and the 2.4 cars they're supposed to have. Last evening (yesterday was warmer than today) there were probably 15 children (ages 1-10) and 8 adults in the street, gathered together just enjoying being outside for the first time in months. By that time of day (6 PM) though, our day is "over"....Christopher is in near-to-full meltdown mode from fatigue (and so are we!) so all I could do was watch the social gathering from my window with envy.
Today, as the neighbors passed by our home...with my "family" all outside, all I saw was averted gazes. We were "invisible"...in this "friendly" neighborhood where everyone waves at everyone else when they drive by...there were no waves, no greetings, not even any curious stares. I'm not sure why we were "invisible" today, although I have my suspicions. And, yes, it was obviously an intentional act on our neighbors' part to ignore us.
My suspicion is that we were "invisible" because we are "different". Maybe they think Amy and I (two adult women living in the same house) are gay (although I doubt they think that about the two young-adult men who rent the house next to us on the south)...maybe it was "all those disabilities" (two obviously mentally "challenged" boys and a woman who "looks fine" but talks like a drunk and uses a walker).
Regardless of the "why" I can tell you that it bugged me. Next time you see someone "different" I hope that YOU just take a second to share a quick but sincere smile. It is amazing what that simple act means. Love, Claudia
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