Category Archives: Cure

I Want You To Know

Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:

1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.

2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.

3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>

|Categories: Cure, Drugs, Life, Meditation, Progression, Relationships, Research | Tags: , , , | Permalink

Apples for ALS

About a month ago, Rob, Scarlett, and I were headed over the Golden Gate Bridge in our glamorous silver mobility van. Alcatraz Island sat to our right, and city views rose behind us, but I always prefer to look left, out at the ocean and the world that never seems to end. I was singing along with my Napster playlist, which was streaming The Lumineers. I love to sing in the car, even though my voice is now much softer than it used to be, but my singing served another purpose as well, to regulate my breathing. We were headed to a friend’s apple farm in Sebastopol for the day, and although we had brought my BiPAP with us, I was hoping not to use it. I have no idea if the singing actually helps in any way, except perhaps to irritate Rob, which is good enough for me. Just kidding, he loves it when I sing (I tell myself regularly.)

The apple farm is owned and run by the family of one of Scarlett’s classmates. We visited for the first time last fall, a trip that was special in a lot of ways, but in particular because the house had previously been owned by a woman whose husband had ALS. That means the home is entirely accessible, and that’s not something we encounter very often.

There are 39 families in Scarlett’s first grade class, and everyone was invited up to the farm Read More>

|Categories: Cure, Drugs, Life, Relationships, Research | Tags: , , , , | Permalink

Fruit Good. ALS Bad.

I wouldn’t call it Writer’s Block exactly. That implies that I’m sitting down and making an effort to write. Instead, I think what I have is more commonly known as Trier’s Block, wherein a person does not even pretend to attempt to write. It’s not that I’m just sitting here making murder eyes at Otto. I’ve been reading a lot. I finished a book yesterday (Today Will Be Different by Maria Semple. Although I loved her first book, Where’d You Go Bernadette, this one is a skip for anyone looking for recommendations). Today, I’m reading Good As Gone. That one is better. I’m keeping up with all of the news, as abhorrent as most of it is. And I’ve been focused as usual on my Google alerts for ALS, which let me know what’s going on in the great world of this rare disease with which I have been blessed.

And that is why I’ve recently seen a couple of studies that make my cranky motor neurons want to fight someone with their flailing little neuron fists. (I’m not a scientist, so I can’t confirm this is possible.) The first was a study showing that smoking cigarettes is bad for people with ALS. Wow. Some real critical thinking must have gone into that one. I hope that absolutely no money went into it, but that’s clearly wishful thinking. The second study, which is in the news today, suggests the very provocative theory that fruits and vegetables would be beneficial for people with ALS. I already said WOW, didn’t I? So this time, let’s see, the word I would use is… Do you think we’re idiots? Who on earth is spending money on stuff that proves what the average kindergartner is already aware of? Why would smoking cigarettes, which is proven to be good for exactly ZERO people, be any different for people with ALS? Read More>

|Categories: Cure, Drugs, Life, Research, Venting | Tags: , , , , | Permalink