Chris King

Understand completely and wish I had an answer or ideas for you and me both but I don’t yet but I’m not giving up on possibilities! Mainly I think some type of morning assessment might help just to stimulate my brain into a better sense of living with this stuff (not my usual description)There has to be something more joyful to our days hop…[Read more]

I’ve never had a clinic visit like that nor a full body MRI or lumbar puncture. Can’t imagine every 6 months, the 3-4 hour sessions that I have every 3-4 months are exhausting and haven’t been that productive after hopefully anticipating the first one. Everyone’s disease progression is so different I feel they’re much more comfortable with a set…[Read more]

I related to Eric’s post as I’ve increasingly experienced the social disconnect the last 6 years dealing with bulbar onset PLS. It was almost immediate once my speech and gait were so compromised and I was filled with rage as I could still contribute to the groups and organizations which I’d been involved with including church. The ALS clinic…[Read more]

I have pain plus cramps somewhat relieved with Baclofen which was just increased at ALS clinic visit still low dose and feel it helps somewhat. My right arm and bicep have hurt plus swollen before officially diagnosed but never explored as upper motor neurons are only responding on EMG? I’m a firm believer in whatever normal we can do keep at it t…[Read more]