[Diane Pascot]

I can definitely relate to the up-and-down roller coaster. I make myself a little crazy sometimes trying to figure out what I did or didn’t do to bring on the lows … because sometimes I can identify the culprit but sometimes it seems just plain random. And when the lows are more intense or stretch out longer than usual … fear sees its opening and pounces. So far, I’ve been able to bounce back to a pretty good degree each time, but I never take it for granted and am grateful every time. I do find though, especially with the changing of the seasons, that there are always things I could do last year that I can’t do now. And while I feel incredibly lucky to be progressing slower than many (knock on wood), each one is a loss and a reminder that this is really happening and that it doesn’t feel like we’re getting all that much closer to a cure. So I mourn for a bit, then pick myself up, dust myself off, and look for ways to keep living and connecting meaningfully while also trying to find ways to contribute to our fight for a cure. Here’s to all of you that I feel like I walk virtually arm-in-arm with on this journey ❤️

[Diane Pascot]

My name is Diane and I’m from metro Detroit. I was diagnosed in 2021 after waiting out the COVID shutdown and believing something was wrong in my neck that was causing my hand/wrist spasms and weakness. I go to the Henry Ford ALS Clinic in Detroit and my current treatments include Riluzole, Radicava, Healey Reginen F clinical trial medication and weekly PT. I also take some supplements – a few recommended by a functional medicine doctor and ALCAR based on a recent Dr Bedlack webinar (in conjunction with my neurologist).

I still work full-time (remotely) but am getting ready to cut back due to the fatigue and weakness it causes – probably to 3 days/week. My favorite activities are walking in our dirt road neighborhood when it’s warm enough (yay Spring!), traveling and sharing great meals with family & friends (even when it’s best to stick with finger foods where possible).

I guess my main mottos are ‘Believe’ a la Ted Lasso and ‘One Day at a Time’ from a bracelet my daughter gave me, plus many inspiring song lyrics. My ‘happy place’ is Ludington, MI but Siena, Italy would be a close second if it were a little easier to get to.

I’m sorry this is so long – I guess I’ve been craving a group like this! Don’t get me wrong – I’m 100% grateful for the slow progression I’ve experienced so far (knock on wood … I almost hate to say it out loud for fear of jinxing it), but I do feel out-of-place and experience a kind of guilt as others have described in some other support groups/forums I’ve dipped my toes into. Huge thanks to Dagmar. I look forward to hearing others’ stories!

[Diane Pascot]

I’m with you, Dagmar – whether it’s a ‘normal’ illness like a cold or the flu or anything else that slows me down much more than it would have in the past (such as the lumbar puncture I had last week for participation in a clinical trial) – I find myself fearing that my ALS symptoms and energy levels are taking a permanent turn for the worse. But I get back to moving as much as I can as soon as I can – it’s the best thing for my physical and mental health. Thank you for sharing your thoughts and insights!