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Robin C replied to the topic Cure SMA Conference 2022 in the forum Raising Awareness of SMA 13 hours, 45 minutes ago
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] -
Robin C replied to the topic Wheelchair Update in the forum Adults With SMA 4 days ago
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]
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Robin C replied to the topic Dealing with SMA Burnout in the forum Adults With SMA 5 days, 3 hours ago
Alyssa, thanks. Yes, when I was younger I really looked forward to vacations. Hugs!
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 5 days, 3 hours ago
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]
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 5 days, 3 hours ago
Amy, thanks. 👋
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 5 days, 3 hours ago
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.
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 5 days, 3 hours ago
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]
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 5 days, 4 hours ago
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.
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Robin C replied to the topic Dealing with SMA Burnout in the forum Adults With SMA 2 weeks, 5 days ago
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!”.
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Robin C and
Yvette Haas are now friends 2 weeks, 6 days ago
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 2 weeks, 6 days ago
Hi Dennis, I have you “beat” by 3 years. Lol It’s nice to meet you.
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 3 weeks ago
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. 😊
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Robin C replied to the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 3 weeks ago
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]
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Robin C started the topic 👋 Hello 😊 in the forum SMA Forums Welcome Lounge 3 weeks, 1 day ago
I finally got around to creating an account, lol.
My name is Robin and I might be the oldest one here, but I definitely don’t act my age (most days). I enjoy reading the forums and watching the videos, etc. I think I’ve even met some of you at virtual events.
I often learn new things from my fellow SMAers and look forward to participating in dis…[Read more] -
Robin C became a registered member 3 weeks, 1 day ago
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Hi Robin, welcome to the forums! I’m Alyssa, one of the moderators here along with Kevin and DeAnn. Just wanted to say hello and welcome. Feel free to introduce yourself in this forum, and please don’t hesitate to ask any questions!
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Robin C changed their profile picture 3 weeks, 1 day ago