ALS Clinic

I go to the ALS clinic at Mass General every 3 months to meet with my neurologist and other members of the clinic team, including a nurse, physical therapist, speech and language pathologist, social worker, etc. I always feel very empowered when I leave my appointment. Everyone there is just so supportive and while I don’t often open up, I always feel encouraged to do so.

Today’s appointment went well. My breathing was down a bit. I’m using the BiPap at night and for a couple of hours during the day. My weight held pretty steady from last time. There were no significant changes in my strength. No huge changes in medicine. I am going to try to taper down one of the meds and see how that goes. My current list of meds includes the following:

• Riluzole
• Baclofen: muscle relaxant; treats muscle cramps and spasms
• Tizanidine: another one for spasms
• Mexiletine: this one is for muscle cramps
• Gabapentin: another one for the muscle cramping
• Glycopyrrolate: this treats sialorrhea, a fancy name for excess saliva. Weaker throat and tongue muscles are to thank for this fun side effect of ALS.

I continue to have several falls a month and so my doctor talked to me again about the possibility of getting a power wheelchair. We had discussed it at our last clinic appointment, but I wasn’t quite ready for it. However, he explained that though it’s a big step, it would actually help me maintain independence in the long run. I use a manual wheelchair now if we travel or go to a place that requires a lot of walking. But I can’t propel the manual chair by myself so my husband or whoever is with me has to push me, which I hate. So having the power chair would at least allow me to get myself around without having to rely on anyone. He made a cogent argument and I feel better about moving forward with it.