Tuesday, September 30, 2008

Take a Congressman to Lunch

I interrupt this blog to bring you a news update about ALS.

Amidst all the hysterical panic and sleezy photo-opping going on in Washington and Wall Street these past couple of weeks, Congress actually accomplished something good ... something that will help ordinary people and will even save lives.

Yes, I mean “our” Congress. The one in Washington, D.C.

No, I’m not kidding.

Congress just passed a bill that will allow for a national registry of ALS patients. Sounds like a simple thing to do ... a no-brainer, right? And not very costly. This will produce major research bang for the buck. If there is a registry of ALS patients, then researchers can begin to investigate causes and look for patterns, and thus greatly increase their knowledge of ALS.

They already know that there are some commonalities among ALS patients, because U.S. veterans have a 60% higher incidence than the population at large. This was first discovered with Gulf War vets, but research has shown that all vets from all recent wars have this same increased risk. So, clearly, something vets have experienced or been exposed to has put them at greater risk for ALS than the civilian population.

Discovering what this “something” is will be a major breakthrough ... and compiling a national registry is a giant step toward that goal.

There is a long, aggravating story about what it took to get this bill passed: It was held up by Senator Coburn of Oklahoma for reasons known only to himself (oh, he gave reasons to people, but they were so lame and inconsistent with his voting record that clearly there had to be something else behind it) and it took an enormous effort from hundreds of volunteers to get the bill passed over his objection. But it finally passed.

The second piece of good news is that the VA has finally ruled that ALS is a service-related disability. No more will veterans have to jump through hoops (difficult when you’ve got ALS) to “prove” to the U.S. government that their ALS was caused by their military service.

These are really terrific accomplishments, and our very own politicians did them. Look outside tonight ... there’s going to be a great big, beautiful, blue moon hanging there in the sky.

There is also very promising research being done on this disease in several countries, and there could be some encouraging medical news soon.

And this brings up money. (I know, you thought I’d never ask.)

Branches of the ALS Association (ALSA) are holding walks around the country to raise money for research. The ALSA of Los Angeles is holding one on Sunday, October 26 in Pasadena, and my husband, Paul, and I are forming a walk team. I don‘t plan to walk the whole two miles ... I figure about a half a block will do it for me ... but if you’d like to join our team and mill around in Central Park in Pasadena on a beautiful October day, listening to speeches, or if you'd just like to contribute to the cause, we’ll be very grateful.

Here’s a link (I hope) to the ALSA web page. Our group is called PALS FOR LIFE. (Patients with ALS are called “pals,” which is kinda cute.)


Hope the link takes you to the right place. You will have to cut and paste it in until I figure out how to "close a link" on this silly program.

I hate asking people for money, but a PALS gotta do what a PALS gotta do.

The regular blog will resume next week, or whenever I get around to it.

Saturday, September 13, 2008

Oh, Just Shoot Me Already

This is my last obit. I refuse to compose any more to meet changing circumstances. At this point in time, this is what it will take to cover all the bases, medically speaking, and I refuse to add any more diseases/conditions/syndromes to my resume.

Neurologists Breathe Sigh of Relief When Patient Dies

Beth Uyehara passed away _(date)_ of Amyotrophic Lateral Sclerosis (Lou Gehrig’s Disease), Recurrent Larengeal Nerve Damage, Myasthenia Gravis, Fronto Temporal Dementia, Stroke, Progressive Supranuclear Palsy, aka Steele-Richardson-Olszewski Syndrome, and Oropharyngeal Dysphagia. She also had a kind of funny itch on her right arm, but doctors disagree as to whether that was a contributing factor in her death.

She leaves behind a beloved husband, many beloved nieces and nephews, a few cats who would like you, please, to stop wasting time on the Internet and go get them some tuna, one cardiologist who has not made eye contact with a patient since getting a laptop, and nine bewildered neurologists, all of whom deny ever having met her.

Not to mention a partridge in a pear tree, which keeps looking nervously in the direction of the cats. (Please. Tuna.)

She will be deeply missed by the Southern California medical community. Her primary care physician wiped away a tear as she recalled the many happy hours she had spent hiding while the patient shivered in the examination room in a paper toga. “That was so much fun,” the doctor said. “She was one sweet little money maker for this clinic. She will be missed.” The doctor asked that her name not be used, as she has not yet received the co-pay for the deceased’s last visit.

You get the point. They just keep piling it on. Adding up all my official diagnoses over the last two years, plus guesstimates, hunches, new developments and second opinions, it feels like I have somehow fallen victim to the entire contents of the Merck Manual. Including Munchausen Syndrome. (You know you’re ready for the Hypochondria Hall of Fame when you suspect you’ve got Munchausen Syndrome.)

I may have three, count ‘em, three neurological diseases going on at once: ALS, which we already know about, FTD (no, not the flowers, but something called frontotemporal dementia), and PSP, progressive supranuclear palsy, another form of dementia. The jury is still out on PSP, although the symptoms are there.

I guess my condition translates to FTDALSPSP, pronounced FID IT ALL SPIT SPIT.

Unlike PSP, FTD has some good things going for it, which is unusual in the dementia biz. For instance, some patients with left-brain FTD suddenly develop considerable artistic or musical talent. I would love to get a shot of talent. Lord knows I’ve waited long enough for it, although with my luck it would no doubt manifest as a mania for bagpiping.

Also, with FTD you sometimes get gusts of euphoria, and you just can’t beat rolling around in rapturous ecstacy as a way to kill time on a rainy day.

One account I read mentioned that FTD patients are sometimes “too cheerful.” Researchers are no doubt working frantically to find a cure for that.

What really got me excited, however, was when I learned that FTD produces personality changes. I’m due for one, and after some dithering, I finally decided on the Mother Teresa model, accessorized with Michelle Obama. Then I found out that with dementia, one’s personality does indeed change, but not for the better. I guess cheerfulness only gets you so far.

But, aside from those minor details, FTDALSPSP remains the gift that keeps on giving. I finally got my handicapped parking permit this week (nice transition, huh?), and I’d like to take this opportunity to send a message to the owner of the yellow Corvette with NO handicapped placard who was parked in the handicapped slot right next to the west end elevator on level C at the Northridge Hospital Medical Center on Tuesday afternoon: That was your one free bite, dawg. If I see you there again, I’ve got a nasty, though cheerful, little dementia here that’s liable to go labile on you on a moment’s notice.

By the way, did you know that you can get a handicapped parking permit in California if you’re blind? My first thought, of course, was, “How on earth do they find their parking places?” Then, “Wait. Should they really be driving at all?”

Finally figured out how it works (i.e., somebody else probably drives. Duh!).

The big problem with having a handicapped permit is that I now spend hours driving slowly up and down parking ramps, ignoring perfectly good spots, looking for a handicapped spot to claim. I’ve earned it, damn it, and I want it! So far, I have yet to find one, but I know they’re out there. It will be kind of a thrill, I guess ... modified rapture, as Gilbert & Sullivan would say ... when I finally get to park in my very first handicapped space. Who says there is no madcap excitement left in old age?

And remember ... if you drive a yellow Corvette ... be afraid. Be very afraid.