RankFamily Archives: December 2003
We have been receiving gifts and HEB cards from friends. It is just amazing the support we have up here in Austin. Patton Elementary has given us $150 in HEB gift cards through Westminster Presbiteryen (SP) Church and some school board members. They also gave us a box of food and have us in the pool for families that need help with Christmas gifts this year. Wyatt's Nurseries will be delivering some gifts for the children.
My PEO club is helping us out with Christmas food and gifts as well. The last meeting they had they collected things that were shiney and brought the loot to us to enjoy. Pies, cookies in Christmas tins, silver baskets...
Cristina O'gorman's husband was diagnosed with ALS a year ago. It turned out that the MDA service coordinator had asked me to give her a call about a month ago. She had not returned my calls, but I guesss we were meant to be in touch. God really wanted this meeting to happen. So to cut to the chase, she contacted the ALS association because she wanted to help some family whose lives were touched by ALS. The ALS association thought we would be the perfect family and contacted us. When Christina called, we realized that our paths had already crossed. Christina wanted to buy the kids a gift and bought us some wine. But wait there is more. Her whole family chiped in and they gave us $300 in HEB gift cards. I said to her, "I can't believe that she did this for us when they will be needing for something too". She cried when the kids opened their gifts-they were so polite and thankful that they gave her (a complete stranger) big hugs. Cole got a scientific calculator, Hannah a huge make up set, and the boys got giant tonka dump trucks. Christina's family is in Michigan and they will move back home at some point. I am sorry about that already.
I am constantly warmed by the amount of support from the community, friends and family. It feels god to be able to help others too. I hope that I will be able to help Christina and her family live with ALS.
Posted by linda @ 01:02 PM CST
With Christmas bearing down on us, things are winding up to the usual year-end fevered pitch. The kids' last school day is Thursday, and it looks like Linda has a lock on a job. I am taking on a lot more chauffer duty as a result of this new job (she's been "auditioning" for it all week). Also, dog-related duties that have officially been left to me include walking Rupert, playing with him, washing him, taking him to the vet, feeding him, watering him, getting up at night with him, getting up in the morning with him, training him, and cleaning up after him. Well, to be honest, Linda has cleaned up a few accidents that she's discovered, and Rupert's first vet visit is coming up, but they're all Joe-jobs on paper, anyway. Linda and I are at loggerheads over the fate of the poor pooch. She claims she made a mistake in bringing him home and wants to give him away. I have thoroughly bonded with him and want to keep him. That illuminates the division of doggie labor somewhat--the price I'm paying for canine companionship is exclusive possession of all responsibility for his existence and well-being. So be it. Would that it were different, but Rupert's got his hooks in me. Those big green eyes sucker-punched me as I was coasting into retirement. I could no more give him away than I could brain him with a shovel. (Don't laugh, that method of dog management came from a vet.) So until everyone in our family recognizes him as part of our family, I'll be yawning a lot.
Linda has been in contact with a young family who got a diagnosis of ALS a year ago. From the sound of things, they're not handling it well. The husband and wife haven't really owned the diagnosis yet. They've not talked about what it means to each other, made any plans for changing lifestyles, acquired any equipment, nor done anything else to prepare themselves for the progression of symptoms. "Denial is more than just a river in Egypt" (Tom Arnold, True Lies). I take the story of how that family dealt with ALS entering their lives, and add it to the collection of stories I've accrued about other families that get this diagnosis, and I am ever more convinced that I dodged a psychological bullet. I've talked to people who, a year or more after their diagnosis, are bitter as hell; just a vortex of negativity. I've heard about couples splitting up after one gets the diagnosis. I've read the writings of people with ALS, writing about their situations, who thought they were being positive, but the undercurrent of negativity just jumps of the page and bites your chin. No, your lip, it bites your lower lip. No, wait; that little piece of skin between your nostrils. That's where it bites. Man, that hurts. Does that piece of skin have a name? I digress. The conclusion that keeps occurring to me when I add another one of these stories to my piggy bank of ALS tragedies is that I got off easy. My disease is progressing slowly, in fact, so slowly that every few weeks I say, "Well, if this is as bad as it gets, I can live with this". I think back a month or two and recall what I've lost since then. My speech, a little worse. My swallowing, a little slower. My cramping, a tad more sensitive. But its moving slowly enough that I feel no despair. I don't feel like I'm careening towards the grave. Thankfully, it's not like, "Oh, no! A month ago I could whistle like a bird! Now I can't talk!" I imaging that would be much worse than "Well, my speech is bad now, and a little worse than a month ago, but it's been declining for a year". I identify with the latter. And I think I owned my diagnosis the first month I got it. I went through the grief. I got the T-shirt. And I just think that one of the things that helps buoy my spirits is not just the fact that I feel like I got lucky with my prognosis, but the conviction that that feeling is justified.
Posted by joe @ 12:57 AM CST
It's been a busy week for me, ALS-wise. I did a study visit on Thrusday, in which I did a number of strength tests and my pin cushion impression. I must've dressed like a voodoo doll on Friday, because I gave a command performance in Houston the next day. The blood tests are the same (except they take more in Houston), but thats about the only similarity.
In San Antonio, where I go for creatine study follow up visits, they have me lay on a table and have me pull for 30 seconds per muscle group against a measuring device to ascertain the strength of my deltoids, biceps, triceps, and grip. I used to do FVC (forced vital capacity), but didn't have to this time. I then answer some questions about how I "feeeel", and get a free lunch of hospital food for my trouble. The testing leaves me tired, but I get my cigar on for the ride back, so its all good. The two notable incidents from this past visit were (1) a research update concerning the excitement in the ALS research community around astrocytes, glial cells, and other neuronal supporting cells ("looo-keeen gooood"), and (2) I turned in my noc-ox (nocturnal oximetry) results that morning, which will inform the doc whether or not my BiPAP is having the desired effect of stabilizing my blood oxygen saturation level during the night. I don't yet know if it is or isn't yet; I've yet to check back with the doc.
In Houston, I am interviewed by a physical therapist, speech therapist, occupational therapist, dietician, and, optionally, a lawyer, financial accountant and counselor. I am put through a number of assessments having to do with timed activities, hand strength, and breathing. I am given a neurological exam, which includes large muscle group strength testing and usually reflex measurement. Happily, nearly all of my measurements from those exams were the same or better than I scored in September. Those that went up were fine motor activities: one-minute counts for putting peg-washer-sleeve combinations into a peg board and turning over wooden plugs. That was all welcome news, but the most interesting outcome was when the doctor herself, not the dietician, suggested I begin taking a supplement called Juice Plus+. She mentioned that she was on it, had several members of her family on it, and was trying to get independent lab testing lined up for it to assess the nutritional advantages over standard vitamin supplements. She claimed that because it is a natural derivative, the absorption rate was anywhere from 17 to 26 times that of standard, OTC supplements. She certainly sold Linda and me on it. I will need to cut down on the other pills if and when I start taking Juice Plus+, to avoid over-saturation. I'm excited by the news, however. I'm especially worked up about the fact that a researcher and physician from one of the premier ALS research shops in the world was talking this stuff up. Hell yeah, I'll try it.
Otherwise, life grinds on. Linda has some hot job leads for picking up a gig mid-schoolyear (i.e., in January), and Rupert and the kids are all fast friends. The Live Oak Trio hasn't met for a gig or a rehearsal in over a month. At this point, I'm expecting that if we go on at all, we go on with a different bass player (it's because of his repeated cancellations that we haven't been getting together). If we do throw in the towel, I'll probably try to form another (jazz) trio or quartet. It's just too much fun not to.
Posted by joe @ 12:16 AM CST [Link]
Well, the inlaws are away and the weekend went pretty well. Ouch. The grandparents enjoyed the grandkids, the brother and sister in law--ouch--were right jolly, and the Longhorns won (Gig 'Em...NOT!). So we're cruising towards Christmas with a full head of steam. Ouch.
You're probably wondering why all the expressions of pain. Well, his name is Rupert, he weighs about fifteen pounds, and he loves to chew on any exposed flesh below the knee. Rupert joined our family on Sunday. He is a chocolate lab with gray-green eyes. His dad is the biggest lab I've ever seen. Rupert is going to be enormous. He's six weeks old, and as thoroughly puppy as they come. The three youngest kids are still a little terrified of him. But they're warming up to him. He is doing very well with potty training. Well, pretty well. But that's the beauty of having tile floors.
I completely underestimated the amount of work Rupert would take. When he's not following me around, I'm following him around. He's afraid I will (a) leave and never return, or (b) find some fun without him. I'm afraid he will (a) urinate or (b) defecate. But we're learning to deal with our fears, he and I. Linda brought home a couple of dog books that every dog owner should read. One is on canine/human communication, and the other is a general doggie HOW-TO manual. It's all good.
Not much to transmit on the disease front. I'm going in this week for a study visit and a clinic. I haven't had any big changes in the last three months. But everything kind of gradually crept along. My swallowing is a little worse, my speech is a little worse, and I'm moving a little slower. I honestly think that the Dallas trip took a few days to recover from, and even then, I can't claim that I'm unchanged from before the visit. That notwithstanding, I'm looking forward to doing again soon after the new year, Rupert permitting, of course. Keep your eyes on the neuro research being published. Things are moving along briskly.
Stay tuned, SBTSBC (same bat time...)
Posted by joe @ 03:33 PM CST