May 17, 2010
Read It and Weep
Well the word is in and my drug trial was a bust. The drug was found to be safe, but ineffective. Oh well, so much for that! On the plus side, that’s six fewer pills I have to take every day, and no more of that drugged out feeling in the afternoon. Still no word on whether I was on the placebo. The news release is here.
I’ll be back soon with good news and pictures from the ALS walk.
March 25, 2010
This Guinea Pig Went to Baltimore
So the first time I went up to Johns Hopkins, in addition to having the Head Honcho ALS Expert confirm the diagnosis — I remember actually flinching when he said the words — I also ended up signing up to participate all kinds of scientific studies. This tends to happen when you find yourself in a research hospital.
Of course, the whole reason I was there in the first place (besides getting the HHAE’s expert opinion) was to see if I could get into a drug trial. My local neurologist diagnosed me on a Thursday and before I even left his office he was calling around to find a trial for me. By the next day I had an appointment with Dr. Rothstein, and on Monday there I was, sitting in an exam room trying to comprehend what was happening to me. (I still don’t understand. Sometimes I don’t even believe it.)
Meanwhile, everybody and their brother is coming in and asking me to participate in their study. I imagine the word had gone out that there was a live one in Exam Room 1. It’s probably not every day they get a healthy 43-year-old in there.
Here’s the thing about having an untreatable, incurable disease: they can’t do anything for you. So taking part in a study at least makes you feel like you’re actually doing something. You know the breakthrough may come too late to help you personally. You understand you might get the placebo. But at least you are doing something so that maybe some other person in the future won’t have to go through this.
It was enough for me to hang on to anyway — which is how I came to participate in, among others, the cognitive function study.
Its full name is “The Relationship between Frontotemporal Dementia (FTD) and Amyotrophic Lateral Sclerosis (ALS): A study of cognition and behavior in ALS” and its purpose is “to describe the prevalence and incidence of cognitive and behavioral impairments in ALS, the risk factors for their development, and their potential association with FTD.” It’s a joint venture between the FTD and ALS clinics.
So now, every six months I get to do a bunch of crazy quizzes to see whether I might have FTD. Don’t get me wrong; this is serious research that could potentially help a lot of people, but being on the receiving end of these questions is interesting, to say the least. Still — anything for the cause.
It starts out with the research assistant reciting a list of about a dozen words which I have to repeat back from memory several times. Then, in a clever twist, she recites 12 different words, after which I have to remember the first list again. There’s a complicated bit involving words and colors, and then I get to say all the animals I can think of in one minute, and then as many words as I can come up with that start with a particular letter, and so on. Just like in Scrabble, proper nouns don’t count.
And then the hard stuff — numbers! Counting backwards from 100 by 7s, reciting long strings of numbers backwards, that kind of stuff. My specialty is alternating numbers and letters (1-A, 2-B, 3-C etc.). Apparently I am setting all kinds of amazing speed records. Who knew I had this special gift, and if that’s the case, why did I stink at math? I should have been knocking it out, Rain Man style.
There’s some other random stuff like remembering my birthday, what city I’m in, how arms and legs are similar — I always have to stifle the urge to say they both don’t work — and drawing pentagons (huh???). It always ends up with her telling me that I’m screwing up all their data because I’m too fast and too accurate.
I take tremendous pleasure in this. This could be because I can’t do anything the neurologists ask me to do (raise your arm, lift your foot, hold your fingers out straight). Or because I’m pretty sure I got the placebo in that drug trial. Maybe I’m just happy that my brain, at least, still works.
March 24, 2010
We Interrupt This Blog for a Medical Update
I had my clinic visit yesterday at Johns Hopkins. ALS multidisciplinary clinics are set up so that the patient (that’s me!) can come in, sit in one room, and be visited by all the specialists in turn. Yesterday I saw the social worker from MDA (yes, I am one of Jerry’s kids), the physical therapist, occupational therapist, the rep from the medical equipment company and the nurse.
First and best news: my breathing is holding steady. They test this by having you blow into a tube as hard and for as long as you can. Most people with ALS die of respiratory failure, so the fact that I’m not having any issues yet is great.
More good news: I did not have to be weighed. Maintaining one’s weight is the second best indicator (after breathing) for slower progression of ALS. However, after my weekend of revelry and chocolate cake eating I was not looking forward to stepping (or being lifted) onto the scale. It is hard to break a lifetime habit of wanting to lose weight! Fortunately, one look at me and it is patently obvious that I am having no difficulty keeping my weight up. (See also: Failure of Abdominal Muscles.)
I found out that my new bed is on the way, which means no more stairs!! It will be hard saying a final goodbye to the second story of my house, but life will be so much easier once I am ensconced in my first floor boudoir. I also discovered that for the last six months I’ve had the seat cushion on my wheelchair inflated all wrong. D’oh!! It’s definitely much comfier now that he’s fixed it.
My arm strength is non-existent, but I got some exercises to maintain my range of motion, and some advice to keep my fingers from swelling up and getting permanently curled up like claws.
So all in all, for a person with an incurable disease, I’m doing great!
I feel so fortunate to be attending the clinic at Hopkins. The drive is a pain in the tail — no matter what time we leave Baltimore, we end up sitting in Beltway traffic — but the ALS team there is taking such good care of me. Between being in the best hands medically and the amazing support from my family and friends, it’s no wonder I am doing so well. Thanks everybody!
