Monthly Archives: July 2014

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

Flight Times

I used to love traveling. I won’t lie and say I adored the airport or being on a plane, but those parts were never problematic. Of course, things got tougher after Scarlett was born. We used to fly, just the two of us, to visit my family in Chicago, and we had some dicey moments in planes. She would scream, I would sweat, other passengers would wave their iPhones in her face, and we would end up hiding in the back of the plane by the bathrooms until she calmed down.

But it was never enough to deter me from our trips together. I really enjoyed being able to travel with her, and for the most part, she was well behaved and received compliments at the end of each flight from relieved passengers who had at first eyed her with suspicion.

In the spring of 2012, I was having a lot of trouble with my feet, and I knew ALS was a possibility, but I hadn’t yet been diagnosed. Scarlett had just turned two, and she and I were flying back to San Francisco after a visit with my parents. Read More>

|Categories: Life, Parenting, Venting | 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