Category Archives: Doctors

An Underfunded Disease

“ALS is not an incurable disease.  It is an underfunded disease.”  – Stan Appel, M.D.

Last year, my husband Rob gathered a huge team of people to participate in the Napa Valley Ride to Defeat ALS. The event was held in September in Yountville, California on a gorgeous day. And I was nervous. It’s sometimes hard for me to prepare myself to be around other people with ALS, people who are further progressed than I am. I was afraid that what was meant to be a day of fun and accomplishment was instead going to be wildly depressing.

I am happy to report that I was wrong. Read More>

|Categories: Cure, Diagnosis, Doctors, Drugs, Life, Research, Therapy | Tags: , , , | Permalink

Adventures at the DMV

I love my disabled parking placard. Of course I wish I didn’t need it, but I’m realistic. It makes my life much easier. Never mind the accessible handicap spots. Did you know you don’t EVER have to pay a meter if you have one of these magical plastic things?

Contain your envy.

But it wasn’t as easy as I thought it would be to obtain my new blue friend, and that is because the DMV was involved.

I assume that nearly everyone reading this has been to the DMV at some point, and I also assume that exactly none of you enjoyed it. This is not a slam on anyone who works at the DMV. It’s just not a very enjoyable place. Read More>

|Categories: Doctors, Life, Progression, Venting | Tags: , , , | Permalink

On Doctors

I recently went to two starkly different doctors offices. The first was my regular ALS clinic here in San Francisco, where I saw myriad specialists, who poked at me and tested things like my breathing and my patience. I got a mostly good report, along with prescriptions for a new wheelchair and braces to wear during the day that will keep my ankles from turning in and looking like they’re broken, which is sort of a horrifying way for them to look. They don’t hurt. Rob was told that he has to massage my feet twice a day, and I have no idea how we’re going to fit that into our busy morning of trying to encourage Scarlett to put clothes on her body and maybe even eat food before she goes off to summer camp. In fact, I’m 100% sure there will be no morning foot massages. So maybe we’ll just aim for once a day. Read More>

|Categories: Doctors, Drugs, Life, Progression, Venting | Tags: , , , , | Permalink