RankFamily Archives: March 2004
Today is the two-year anniversary of my diagnosis. Gadzooks. I barely remembered it. It almost slipped by me. But the past few days have seen so many major blips on my radar screen, it's almost understandable.
The five hundred pound gorilla was the Music4TheMan benefit my friends staged for me on Saturday at the Alligator Grill here in Austin. Matt the Electrician, Sara Hickman, and The Gene Pool stepped up to the entertainment plate and all hit home runs. And pretty much everyone I know in Austin showed up. And then there were friends of friends, people who had heard about it on the radio, people my wife works with, and a good passel of complete strangers. It was humbling.
I have never considered myself to be a social person. My self-perception has always been that my value to other people derived from my skills (by which I mean my sense of humor, intelligence, musical ability, athleticism, etc.) rather than from any innate charisma. I see myself as guarded and private; kind of a hard person to get to know. But even as my "skills" fade away, the relationships I have constructed seem stronger than ever. With this disease, I feel sometimes like I'm standing in the current of a swiftly flowing creek, fighting to retain my footing. How easy it would be to just pull up my feet and stop fighting the current. Just go with the flow, and drift downstream. Skip a meal, blow off a day of my supplements, stay cooped up in the house all the time...just watch tv and find distractions to burn off time. Drift. But a night like Saturday night was like a veritable parade of people (who must value me for some other reason than the skills which are falling away from me) slogging out into the middle of the creek to encourage me, bolster me, even hang on to me, and not let me be swept away. The "shot-in-the-arm" analogy falls way short. I still have to fight (nothing will change that), but the ennui and languor that undermine my will to fight just dissolved over the course of the evening. The negativity that insinuated itself into my attitude over the months of fighting with insurance companies was dispelled. I didn't know how much I needed it, but every person there Saturday night demonstrated that it IS important how I feel, how my fight is going, what happens to me and my family. More than a hundred people can't be wrong. So to have that kind of thing happen was an affirmation on many levels.
The other big positive was the purchase of a keyboard amplifier which will allow me to play with the trio in venues that don't have accoustic pianos. One of the ways I drift (in the sense above) is to ignore my playing. Not practicing makes me into such a hypocrite. And how do I combat that guilt? Well, by finding something to do other than practicing, of course. I handled studying for tests the same way all through high school. Anyway, now that the amp is being shipped, I'm all jazzed up (pun intended) and probably practicing more than I should. C'est la vie.
And it wouldn't be a garden without both roses and weeds. I subjected my family to a monstrous weed last night. We were coming home from Mangia pizza and I popped a hard candy in my gob. It stayed put for about 10 seconds, and then leapt into the back of my throat—a no-man's-land for food. I made some gacking sound that was enough to set off Linda's alarms, and before I knew it, I was out on the side of the road, shaking and thinking hard about my own death. I only had blockage for about 2 or 3 breaths, where air wouldn't go in or out. I think when I grabbed my throat, the candy slid out of the windpipe and up into top of my pharynx. I could feel it up there, and was trying to swallow it down, but it was happy right where it was. Linda gave me some water, and I would take a mouthful, swallow, reassess, and repeat. I was afraid it might slide down into my windpipe again as it got smaller, but it never did. Finally, I conjured up two mighty gags, and the second one squeezed it out. Needless to say, everyone was shaken up. It's enough to make a fella think about giving up hard candy. ;-)
Posted by joe @ 09:47 PM CST
I don't know how I could've forgotten this, but I left out my favorite part of the Houston clinic. I was reminded because I got to experience it again returning from Moody Gardens last weekend. The HOV (high-occupancy vehicle) lanes!! This last Houston clinic was the first that didn't include a one+ hour delay on IH-10 leaving Houston. We would sit on IH-10, mired in the quagmire of west-bound traffic, moving in 5 mph pulses, while cars with 2 people in them whizzed by us at 60 mph in the HOV lane. It's one thing to be passed by all those cars when you're the only one in your car. It's a totally different animal when you qualify to be in the HOV lanes, and you can't find a way into them. Well, that was then...
Prior to our leaving on Thursday, Linda got maps of the HOV entrance points for IH-10 from the Houston metro authority. Getting to one took some looking--the entrance points are not on the freeway itself--but we found one. And one is all you need, baby. We left Houston, triumphantly, at 60 mph, casting aspersions into the sea of red brake lights we were passing. A lot of healing went on for that 10 miles or so. As we zipped past cars, I thought I heard the wind call each one "loser". Oh, that wasn't the wind, it was me. Anyway, it was the true high point of the trip.
Moody Gardens was a delight. The aquariums they have there are truly awesome. (I'm always reluctant to use that adjective, because I mentally hear Keanu Reeves tag it with "..., dude".) There were 3 sharks over five feet long in a million gallon tank. There is a glass tunnel through the tank where you can sit and watch them, and hundreds of other fish, swim over you. Everyone enjoyed the rides (yes, they were tame enough for me to ride), and I came away with a great premise for a short story, which is already in the works. The hotel was fabulous, and the food was great, too. The only problem was going in the Tracer, a compact station wagon. The (older) kids were at each others' throats because they didn't have enough room. I did most of the driving. And, again, on our way out of Houston, we were in the HOV lanes. It wasn't as busy in the main lanes, but we still saved some time.
As for how things are going, the battle over my long-term disability (LTD) is mounting. The insurance company claims I first enrolled in it January 13th of last year. I remember being told (by some qualified company rep) that I had had it all along (since 1998). So we're collecting documents, writing reps, and going back over the plan details to fight this latest move to deny me benefits. I don't know what I expected...in retrospect, it would probably seem odd if the insurance companies paid my benefits in a straightforward and responsible manner. But, as if I could forget, every time I deal with these companies, I'm rudely reminded that they're in business to make money, not to help people. I don't know how some of these folks sleep at night, knowing what they do for a living. I guess it's sterile if you do it through the mail and over the phone. Or maybe life has just kicked them so hard and/or so often their conscience has gone numb. I can see how that could happen. My conscience isn't in peril, but I sure have to guard other parts of my psyche. Well enough.
Posted by joe @ 10:57 PM CST
Linda and I returned from the MDA/ALS clinic in Houston. Reinforcing an emerging theme in my life of late, I wish it had gone better, but I'm sure grateful for how well it went. My forced vital capacity (FVC) dropped by about 6%, from 80% (of predicted for an adult male of my age) to 74%. That was the worst news of the visit. It was offset (eclipsed?) by 5 words from Dr. Appel to a nurse when considering my eligibility for inclusion in studies BCM is conducting. The words were, "He's definitely a slow course". When Linda and I coaxed some elaboration out of him, he confirmed that my disease is the form that develops slowly. This is tantamount to doubling my life expectancy, according to the expertise of Dr. Jackson in San Antonio, who is the other physician whose care I'm under who also happens to be the head of a neurology department at a school that does research on ALS. My hand strength had dropped a little, but I set a personal best in one of the fine motor skill assessments for my occupational therapy grading. The test is to put a cylindrical peg (measuring about 2 cm. in length by about 5mm. in diameter) in a peg board, followed by a washer around the peg, and finally a small metal sleeve around the peg and over the washer. I do this as many times as possible in a minute. With my right hand, I did twelve sets, which was a record for me. My left did about 8, down from 10 the last time, but I knew that was coming. I've noticed some loss of lateral range when I play piano chords with my left hand, and some fatigue problems too. Another problem with playing piano is my upper back fatigue. But, I got a figure eight brace from the orthotist at the clinic. An arm goes through each loop of the "8", and the loops join between my shoulder blades. It is comfortable for a couple of hours, but my shirt tends to bind in it. I expect to get a lot of use out of it, though. And, it was free. (Free anything is almost unheard of in the medical industry.)
Moving inward, I can report that my changes are not all negative. For example, I used to go bonkers when the kids were all running around and screaming. We have a central structure in our house that provides a natural jogging track upon which to enjoy all manner of chasing games, especially those accompanied by maniacal, shriek-punctuated laughter. I would particularly cherish those "games" that escalated into a full-blown fight, with at least one child hurt and crying at its conclusion. Well, I don't know when it happened, but I now seem immune to that brand of aggrivation now. I still do have the energy/ability to break up such episodes, but I don't seem to mind them anymore. I usually only step in when I see things getting out of hand; i.e., when the first real threat is uttered, or the first hand is raised in anger. I don't know when it happened, but the childrens' noisy, chaotic playing has turned into a source of pleasure for me rather than a source of stress. It's been proposed to me by a psychologist that I have ADD and a condition called "sensory integrative dysfunction". That basically means, as far as kids are concerned, normal kids just being normal kids pushed by buttons. The surprising and happy news is that that seems to no longer be the case. Maybe the ALS ate the ADD and SID. Maybe this is fronto-temporal dementia from the ALS. (You don't know about FTD in ALS? Tsk, tsk...) I'm not going to look this gift horse in the mouth, though. It's just nice to find a diamond in the mud once in a while.
Posted by joe @ 08:55 PM CST
The dust is settling after a busy week for the Joe Rank family. On Thursday, Feb. 26, Linda had emergency surgery for a ruptured ovarian cyst. They sent her home on Friday and I spent from Friday 'till Tuesday in Austin doing the grandma thing of tending the flock while Linda recovered. Linda is bouncing bask beautifully. She'll be off from work all week, Doctor's orders, and she cannot drive, so Joe is doing full time chauffer duty. She should be able to return to work Monday.
Feb. 29th was actually the 4 year old twins' "first" birthday. They received their first two wheelers, with helmets and training wheels, and we celebrated on Sunday. One neighbor remarked that the side walks aren't safe with the Rank twins on two wheelers.
While I was there, we ordered Joe's special neck support from England, and the Joe Rank ALS fund picked up the tab. It should go a long way towards alleviating his fatigue and discomfort in the neck and shoulder area.
I had the pleasure of sitting in while Cole practiced his bass with his dad coaching - Cole is becoming very proficient on the bass and has been moved to a more advanced level at the UT String Project. Cole also seems to be very protective of his dad, particularly as speech becomes more difficult for Joe.
Hannah's just Hannah - smiling, chattering and socializing her way through life. She seems to take everything in stride and just keeps bouncing. Hannah's my role model.
Posted by grace @ 12:52 PM CST