robin-c
Forum Replies Created
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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 live closer (like in the same city) to the conference locations.Bottom line, I totally understand how you feel.
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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 strongly recommended a molded seating system, but I’m not convinced that will be comfortable, AND I would have to change the transfer method I’ve been using for decades…..so, no, no big changes for me….at least not yet.
I’ve had my chair and cushion since January 2019, and the biggest reason I did it then was because my scoliosis had gotten worse and since I needed a new seating arrangement I got the reclining back and leg elevators (finally, I saw the need!). I’ve probably had fewer wheelchairs in my life than most SMA adults and I really don’t look forward to picking out new ones at all!!!
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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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Micaela, you took the words right out of my mouth!
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DeAnn, great question! (Sorry for a long reply, but I’m reminiscing.)
Yes, I think there’s only one time in my life that I absolutely “(figuratively) jumped” into a power wheelchair…..which was when I was in my sophomore year at college.
My freshman year, wayyyyy back in 1974, I walked the (Upstate New York) small college campus, and it was positively exhausting! I didn’t really consider any other means of getting around. Then, sadly, my younger brother with SMA type 2 died in March of 1975 and his (very expensive Everest and Jennings) power wheelchair was no longer being used.
In the Fall of 1975 my parents lugged that power wheelchair off to college with me, and I was overjoyed!! That heavy “beast” slipped on ice patches, BUT I was safely sitting down!!
After my undergraduate years, I left the “beast” at my parent’s house. It was probably the mid-1980s that “on a whim” my husband and I stopped at an out-of-town DME supply (while on vacation) and decided on-the-spot to purchase a “demo” small adult power wheelchair so I wouldn’t have to walk long distances (for instance, on vacations). We purchased an accessible minivan, too.
I used that power wheelchair in town on weekends (for Mall shopping, lol) and on vacations for probably 10 years (!!), before I became more comfortable using wheelchairs and started using one on a daily basis. Now I can’t live without it. Oh My, how my life has changed!! -
Alyssa, thanks. Yes, when I was younger I really looked forward to vacations. Hugs!
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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 would love to supervise. (My husband refuses to let me supervise him!!) And I’m definitely a “people person” who enjoys helping others.
FYI, the genetic genealogist’s name is CeCe Moore. ????
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Amy, thanks. ????
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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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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 mid-40’s. Some days I really struggle, but I have a supportive husband and family. ????
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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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Hi Dennis, I have you “beat” by 3 years. Lol It’s nice to meet you.
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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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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 officer positions with 2 nonprofit organizations, and volunteer with 3 other organizations. Let’s just say I am still trying to find a healthy balance between being busy and overly stressed out. I could be labeled a “slow learner” when it comes to saying “no”. ????