Category Archives: Doctors

Precision Medicine

Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. Read More>

|Categories: Cure, Doctors, Drugs, Progression, Research | Tags: , , , | Permalink

Speed4Jay

When I was first diagnosed with ALS, I wasn’t sure I really wanted to talk to anyone else who had it. I was in shock, and I wanted to hold everything close to me, including my particular situation. But as time went on, and my disease progressed to the point where it was affecting many aspects of my life, I realized that I needed support from people who truly knew what I was going through. I tried to ask a few questions at ALS forums online, but I found the responses to be harsh and negative. I asked my doctor to introduce me to other patients who were young and who had kids. And when I wrote an essay on parenting in The New York Times, people with ALS reached out to me.

I struggle with the words to explain what it has been like to find people who are also experiencing this disease. Our lives—and even our symptoms—are different in many ways. We are spread out across the country. We wouldn’t know each other if not for ALS. But now we are going through this, apart-but-together, and it’s a source of comfort to know that. We can ask each other questions, some of us can talk on the phone, others send notes of support and encouragement. Sometimes we are angry and we can just be angry together. Read More>

|Categories: Diagnosis, Doctors, Life, Parenting, Progression, Relationships | Tags: , , , | Permalink

Back to the Clinic

I had my regular ALS clinic appointment last week. I go every three months, which is recommended based on my level of progression. It’s not an uplifting place, but I’m learning to prepare myself and to control my reactions, regardless of what the clinicians might tell me. Having Rob there is crucial. The one time he couldn’t make it is the one time I ended up sobbing, and it took me a week to get back to normal.

Here’s how the appointment goes. I start out by getting weighed. That means wheeling my chair onto the scale to get the weight of both of us. Then I hop out (just kidding! I get out slowly, with help) and they weigh the chair alone. This brings to mind a new mom weighing a baby by holding it in her arms, and then weighing herself without it, and that thought leads to another thought and then another and I find myself wondering what I would be doing right then if I didn’t have ALS.

Then the nurse comes in and asks a series of questions called The Functional Rating Scale to determine how far I’ve progressed since I was last there. Yes, that’s right. They’re asking me. Read More>

|Categories: Diagnosis, Doctors, Drugs, Life, Progression, Research | Tags: , , , , , | Permalink