Category Archives: Progression

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

My Unique Sound

Yesterday, I set out to conquer the world of voice banking. For those who are uninitiated to this fairly new and exciting technology, it’s software for people whose ability to speak might become compromised. Many—though not all—ALS patients will face deterioration or outright loss of speech in the course of their illness.

An article on the Muscular Dystrophy Association website says:

Not everyone with ALS loses their voice, but it’s a common symptom, especially in bulbar-onset ALS. While there’s no easy way to prepare for this prospect, “voice banking” is a viable option for preserving your unique sound and the identity it represents.

Ideally, you start early, before your voice is affected, which is where I am now. Read More>

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