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!

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

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

Porches

March 2, 2007 - The wind is howling outside....Indiana spring is around the corner. I am SO ready for warmer, sunny weather. I am excited that this year I might be able to spend some "leisure" time outside enjoying the sun and the breeze. My dream house has a big 'ole porch that is about 10 feet deep...plenty of room for a few rocking chairs, a wicker loveseat set and maybe a porch swing. I love to sit on a porch...something that is missing on almost every house built after 1930 it seems. I love our subdivision, but everyone works all day and when they get home they're too busy working at home to just "set a spell". Now, I realize I sound like a grandma Moses here, but I've longed for the front porch moments for as long as I've lived away from my parent's home. Especially with hyperactive autistic kids, the serenity of a porch just sounds that much more appealing.
Years ago, when Christopher was 2 and I was a full-time student at Ball State, we lived on a house on West 5th Street in Anderson. Now, those of you who know Anderson know that this is by far not the WORST part of town, but it is far from the best. But the wonderful thing there (besides having the world's greatest landlord, Tim Basey) was that the house had character. The house was built in the 30's or 40's and had a front porch...not the porch of my "dream house" but a nice-sized deep porch. We put a gate up at the top of the stairs to the porch and Christopher (who didn't walk until after he was 2) could crawl around in relative safety while we sat, had a glass of tea or just watched the world go by. It was nice....relaxing and some of the best memories I have of that house were of that porch. Unfortunately, the area surrounding the house wasn't the greatest, and within less than a year there had been several serious crimes committed within a few blocks. The final straw was when Amy stepped out the front door with Christopher to find the police, guns drawn, making a felony arrest right in front of the house....instructing her to "go back inside...NOW!". Time to move and, well, let's just say that the move (to Muncie, so I'd be closer to school and have more time with the kids) wasn't a move "up" in terms of housing. But I remember the porch on 5th Street. And when I think of spring, I think of sitting on a porch with the birds chirping and the breeze blowing... only this time in my imagination I am in a motorized wheelchair. I can't sit in the porch swing or rocker. But I can still take in the sights, sounds and scents of spring. I hope that by the time I'm in that wheelchair full-time, I have a porch like that to retreat to.
I am so grateful that I now have time to stop and look forward to spending time doing those things I didn't have time for when I was working 2 or 3 jobs just to make ends meet. I have so much to be thankful for!! Much love, Claudia

The Spoon Theory

February 16, 207 - Life is different now...of course, my life was different than 'most' before ALS....raising children with special needs changes even the most basic day-to-day tasks. Not that life is WORSE, but it is different. Today I stumbled upon a story that helps explain how my life was different even before ALS and especially how it is different now. The story is called "The Spoon Theory" and it was written by a young woman with Lupus. I encourage you to read the story by clicking here (this is a .pdf document and you will need the free Adobe Reader to access it). And the next time you face a choice about what to do...think about the number of "spoons" you have in your life. What the story doesn't discuss is how those around us can share their "spoons" with us. This is a perfect time for me to thank those of you who have taken the time and effort to "lend a spoon"...in so many different ways. There are so many things that you may take for granted that we no longer have the luxury to.... Now, make NO MISTAKE (!) I DO NOT WANT PITY from ANYONE. I have a wonderful, rich life full of blessings! But, sometimes, I do need help...and that need will only increase as my ability to function declines. I am grateful to those of you who choose to help....the co-worker and neighbor who just stops by with jugs of distilled water for my BiPAP because she knows I need it every night...the co-worker who mowed my yard (before the deep freeze hit!)....the friend who stopped by just to say "hi" and took time to play with Christopher....the friend and co-worker who cleaned my bathrooms and of course the friends and strangers who have donated as well!!! There is no gift too small. You bless me with an email or an IM and I need that friendship as much as we need material and tangible help. THANK YOU!
I hope you'll take the time to read "The Spoon Theory" and that it reminds you of all the blessings you have in your life! Don't take your "spoons" for granted! As the author of "The Spoon Theory" says: “I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.” Love, Claudia