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Kyle George Hahn - ALS Clinic visit
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My Physical Therapist, Dan
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The man with the hammer |
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Visiting Research Fellow, Dr. Tsao
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TheYorba Linda ALS Center in California is Lucky |
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My Respiratory Therapist, Anne
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A woman, a mask and a machine - |
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My Speech Pathologist and Nutritionist, Joan and Sandy
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Eat, Drink and be Merry |
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The ALSA & Athena Team -
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Great teeth, huh? |
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Dr. Erik P. Pioro, MD, PhD
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The Best ALS Team! |
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Research Nurse, Doreen
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exit stage right to... | |
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| Our trip began like all our trips begin,
with all intentions of leaving at a set time,
and traveling like most motorists, getting
in at a reasonable hour. But like all our trips, intentions are quickly tossed by the wayside (about the only thing quick in our lives these days). We did set out on our 238.4 mile trek to Cleveland by 6:30 p.m. Now, according to Mapquest.com, we should have arrived by 11:00 p.m. (est. driving time 4 hours, 24 minutes). We've yet to figure out exactly what happens, but we enter some kind of a time-warp whenever we get into our van. Maybe, the van is really the spaceship from the movie "Spaceballs" and warp-speed is something completely backwards then what Capt. Kirk had in mind. Whatever it is, with only refueling stops, we arrived sometime after 12:30 a.m. at the hotel (which by the way was about 20 minutes closer to us then Cleveland). Nevertheless, we did arrive safe and sound (well, everyone except Terry, but she's never quite sound anyway). My aide Michelle, took the dare to come with us to clinic, so she was about to get a real taste of our rather bizarre and hectic life. We were all whomped, and therefore, hit the hay immediately (which should be interpreted to be about 1:30 a.m., even "immediately" qualifies for our time-warp). Wake-up call came in for 5 a.m. Here's where Terry is the real glutton for punishment. She always has this strange idea, that we could actually be on time for something. Go ahead, Ter... get up at 5 a.m., see if we care (we didn't). She did try to start rousing us at 6 a.m., even ordered breakfast, thinking the smell of hot food would seduce us from our blissful slumbers. She finally resorted to something short of revelle. We were an hour late for clinic. Which to me is right on time. Actually, the clinic is very cool. They know we have a long drive up there, and are sympathetic (or at the very least, tolerant). You all know the routine, first ya get weighed. Well, you and your wheelchair get weighed. What commenced after I got off the scales, was near panic. The nurse figuring the weight, said, "That can't be!" Hmmm? What did she mean by that? She left and sought out a senior nurse. They reviewed the numbers, they reviewed the metric conversion. They finally looked at me and Ter and queried, "173 lbs?" Maybe the scale was whacked out (vibes from our spaceballs' van) or maybe, just maybe, it has something to do with changing from size 40 batteries to size 55 batteries. Ter broke out in a roar and my eyes were bugged out on stems! Especially, since we just did a home weighing last week at 144. After some pondering, we all agreed to transfer me to the weighing chair. This is one of those Marquis de Sade entrapments, similar to the aisle wheelchair for airlines. But it was far more accurate, 145 lbs. Now on to the slaughter house...oops I mean the team room. From 9:30 - 12:30 we are imprisoned in this small examination room, in which, we wait, with baited breath to see what ALS Team member will enter through the door next. Watch Terry closely, you know we are near the end, when she can't keep her eyes open anymore. Actually, we should have pity for this wonderful team. Not only do we always show up late, but we don't even have the courtesy to be good little sheep. We gotta ask questions. We wanna know what's new, what's hot, what's not... tell me, tell me, tell me! And they are the greatest. Whatever they got, they share, and sometimes, they wanna know from us. It's kinda like family. My clinic appointment was going swimmingly. My stats were unchanged from a year ago... but wait... maybe not. Last year, I weighed in at 156 lbs. I lost 11 lbs? If you didn't guess, Ter was roaring again. Last year's appointment, I brought a whole mess load of my cd's for the clinic team. Oh about 20 of them or so, all packed in my wheelchair bag. The next day, when Ter was fishing through the bag, she laughed. Now she knew why I weighed 10 pounds more then she thought. Dr. Pioro is great. He came to Cleveland Clinic under World reknowned ALS specialist, Dr. Hiroshi Mitsumoto. Dr.Mitsumoto had ran the ALS clinic for years, but decided to move on to Columbia Presbyterian in New York City?! Dr. Pioro was now thrust into the lives of PALS who had come to know and trust Mitsumoto. For me, being a survivor, I had met Dr. Pioro when I first came to the clinic in 1995. He was there then as a Fellow doing research on MRI's and ALS. I like him. He's open and honest. He is deeply involved in, and genuinely excited about the ongoing research available today, and around the corner. He is sincerely interested in his patients. Even with our horrendous disrespect for time, he never acts rushed with us (and we made him late for a meeting, naturally, but he probably told everyone that we were in clinic today... that alone, would invoke a collective, sympathetic sigh) -Kyle (PALS) Dx ALS November 1995 |
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