Sunday, July 26, 2009

What Do You Think? Should This Ad be Banned?

My friend Sarah Ezekiel is a PALS who lives in London. There is a TV ad she starred in, a public service announcement from the MND Association in the UK. MND stands for Motor Neuron Disease, which is what ALS/Lou Gehrig's Disease is called outside of North America. The ad is disturbing, but no more disturbing than the PSAs for stop-smoking campaigns, which show people with laryngectomy holes in their throats, shots of rotting lungs, and people gasping for air. You can read the article [link above] from a UK newspaper, and you can watch the video at this link

Disturbing? Yes. It's supposed to be. Scary? Of course. But you can turn the video or the TV off. We can't turn off ALS/MND. Why is this disease so scary to people? I'd be interested in getting feedback from people, especially from people who don't live ALS/MND firsthand, like patients and caregivers.

Thursday, July 23, 2009

New Study Shows Agent Can Improve Muscle Strength, Size, in Mouse ALS Model

click on the link above for information about a phase I trial at Johns Hopkins' ALS Packard Center in Baltimore of a new agent which is believed to slow down muscle-wasting in ALS patients.

Tuesday, July 21, 2009

PEG Feeding Tube Replacement, etc.

I haven't updated in a while because I've been wasting too much time on Facebook and Twitter [fec139, if you'd like to follow me].

A lot has been happening. Of course, the July 4 Yankees vs. Blue Jays game, which was part of a nationwide collaboration between Major League Baseball, was wonderful [see link in previous post for the full story].

It's been time to replace my PEG [feeding] tube. It is leaking and kind of stinky if you get your nose up to it, although undetectable through my clothing. A PEG tube usually lasts for about 2 years, but I have had mine for almost four. The worst scenario is if the tube breaks, or otherwise causes a trip to the ER -- especially at night or during the weekend -- only to be at the mercy of an attending or intern at a local hospital, where they know nothing about ALS. I've been there and done that, and have no desire to repeat that otdeal. The nurse at the ALS clinic told me it would probably just be able to be done right in the gastroenterologist's [GI doctor's] office. This turns out not to be true. He has to do it in the Endoscopy suite at Beth Israel Medical Center [BIMC]. Now, here is what frightens me: there is a 90% chance that the PEG will be able to be replaced with no complications and no anesthesia. But it's the 10% that frightens me. There is a 10% chance that the tube will crack and then they will have to put me under anesthesia and go in through my esophagus. I am terrified of thid because my FVC [forced bital capacity] respiration is so low. I had the original tube put in so early in the disease, as advised, because I was told to do it while I was still strong enough.

So, I am hoping I am one of the 90% that can have this done without anesthesia and get up ad leave the hospital that same day. Everybody pray for me. Besides, I have Mets tickets at the new Citifield on Sunday, August 2, which is two days later, and I am determined to get there!!

Thursday, July 16, 2009

A Day of Pride and Hopefulness at Yankee Stadium

Read my latest guest-blogger post on the ALS Association of Greater NY Blog, about my experience at Yankee Stadium on July 4, which was the 70th anniversary of Lou Gehrig's "Luckiest Man" speech.

Sunday, July 12, 2009

How Michael Jackson and MTV Changed Our Lives
Part memoir and part history, the evolution of the music industry in the MTV/Michael Jackson era.