Thursday, September 25, 2008

ALS Registry Bill Passes Senate

As researchers and scientists across the country [and worldwide] to find a cure, or even more effective treatments, for ALS/Lou Gehrig’s Disease, it was announced that the United States Senate passed the ALS Registry Act, which will develop a system to collect data and establish a national registry on ALS/Lou Gehrig’s Disease, and other motor neuron disorders. These neuromuscular diseases are often confused for other disorders like Multiple Sclerosis, Parkinson's, spinal-cord damage and other conditions. In fact, there have been numrous cases where patients with misdiagnosed ALS have gone through the wrong treatments for years, or unnecessary surgery, before finding they had ALS. The bill passed the Senate HELP and House Energy and Commerce committees by unanimous vote in 2007 and recently passed the House. After yesterday’s Senate passage by unanimous consent, the bill will now go to the President’s desk. New York State Senator Charles Schumer is a co-sponsor of the Senate bill.

What does this mean for ALS patients?

It means that scientists and researchers are one step closer to finding a cure for ALS, which is currently incurable, with treatment limited to medications that alleviate symptoms. The national registry will help identify the incidence of ALS in the United States by collecting the data which will identify patterns and commonalities. These findings will improve ALS research, management and treatment. This legislation will significantly augment the nation’s efforts to find a cure for ALS.

If anybody remembers my blog entries from May, 2007, a delegation of PALS, CALS, and family members of people with ALS went to Washington DC to lobby for the passage ofthis bill, so I am proud to have been part of that.

Saturday, September 6, 2008


I have had to deal with the most maddening situation this week. Basically, I needed something and it all seemed so simple to me -- a couple of phone calls, maybe a form to fill out, and a professional involved in my case to expedite the whole thing. Well, this process took on an ugly life of its own. Three days of unnecessary emails, doubt, and questions from the "professional", enmeshed in bureaucracy, left me angry, exhausted, defeated, and bitter. In the end, I had to remind myself of a few rules:

1) A definition of insanity is "doing the same thing over and over, and expecting a different outcome"
Well, this person is someone I have dealt with before, more than once! Each time I have dealt with her, I end up feeling the same way I did yesterday. So why did I go to her
again? Does this mean that I am insane? Probably. But it also a control issue, one where I somehow convince myself that a less-than-competent bureaucrat will see things
my way, or at least I can teach her to. Well, sadly, this never works with most people.

2) I seem to forget, at times like these, that not everybody works as I do. Part of this frustration is due to the fact that I can't work anymore, and wish I could. Anyway, I
am always thinking "if I had that job, I could do it so much better.

3) Most importantly, at some point, I just have to accept that my problem isn't going to get resolved with this person and either move on somehow, or find another
resource to solve the problem.

The problem with ALS is that there is often no time for this nonsense! You would think that the people who work with ALS patients for a living, would always keep that in mind. Alas, this isn't always the way!