Robin C

Hi DeAnn, no I didn’t attend the conference. In fact I’ve never attended on in-person. I’ve attended virtually, though, during the pandemic and LOVED getting to meet fellow SMAers.
In a perfect, I would have traveled to a conference while I was younger, more adventurous, and more ambulatory, but that didn’t happen. Too bad you and I don’t l…[Read more]

Gee, this topic resonates with me…A LOT. I can empathize with everyone here.

At a “seating modification/consultation” appointment a few weeks ago, the rep was adamant that my cushion was under-inflated. He was likely correct, but he then pumped up the cushion so much that I had hip pain after a few hours sitting on it. Sigh

He also stron…[Read more]

Alyssa, thanks. Yes, when I was younger I really looked forward to vacations. Hugs!

DeAnn, I have seen your videos so I expect you garden in your downtime. I really can’t seem to keep plants alive, so gardening is not an option. 🤣

I guess my down time is either watching HGTV programs or socializing online or on the phone. I daydream about redesigning/remodeling our kitchen, lol. Of course I can’t do the physical work, but I wou…[Read more]

Amy, thanks. 👋

Blake, thanks!  Yes, I do seem to recall you, lol!  I haven’t seen any notifications for the “hangouts” since late last year I think. I’m glad that I finally decided to join this forum.

Diana, thanks for the warm welcome. It’s nice to meet other “elder” adults. I feel like SMA and aging needs more research and documentation. I realize that statistically we’re a small group and until the internet we really couldn’t network and share our experiences.

I have SMA type 3, (3 copies of SMN2) and have been non-ambulatory since my…[Read more]

Hi Dennis,

I was “lucky” because my brother and I were diagnosed by EMG and symptoms in 1964 (I was age 8), by a very knowledgeable woman doctor (she was a ground breaker). She was my neurologist until I married and left my hometown.

I agree things have changed for, the good, since then.

Alyssa, yes, I have been trying to resolve several health issues for over a year. It’s daunting and overwhelming. Unfortunately I can’t delegate this responsibility, but more than once I have said “I don’t want to Adult Today!”.

Hi Dennis, I have you “beat” by 3 years. Lol  It’s nice to meet you.

Alyssa, thank you for your kind words. Yes, being an old soul definitely counts! It’s nice to meet you here, as I have read your articles and followed you on other media for awhile. 😊

Hi DeAnn! It’s great to be here.

yes, I stay busy, although I retired after a 34 year career in state government, much of it as a middle manager. My main “hobbies” are genealogy research and “making my husband’s life ‘miserable’” – a mutual joke after 40+ years of marriage. I also help manage my 92 year old mother’s care, serve in multiple offic…[Read more]