Alyssa, I have met Chris (on Facebook) and he’s remarkable.

I’m happy to hear that you can chat with your friends about aging. I used to think old people in my family were boring because they “always” talked about their aches and pains, but I’m just like them now. 😜 My siblings and I start our phone conversations with the weather, (like my…

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Another thing I struggle with – is my loss of function part of “the normal aging process”?

Now that I’m a senior citizen, there are things like arthritis and osteoporosis that many people my age experience. The arthritis especially complicates my SMA disability. I try not to grieve “growing older as a disabled person”, but it really hits me hard…

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Hi Terry, you should be able to find it either by searching or maybe the link I just tried to post.

https://www.facebook.com/groups/1992651431088271/?ref=share_group_link<div>Ah, posting the may or may not work. You’re welcome to try.</div>

FYI – That private group is on Facebook, so if you’re not a member of Facebook you could still post here. I haven’t started a thread/group here, but perhaps someone else might?

That private group is on Facebook, so if you’re not a member of Facebook you could still post here. I haven’t started a thread/group here, but perhaps someone else might?

That’s great. You can search for the group and click on join. I’ll be looking for your request. 🤗

I believe I first met DeAnn during the CureSMA virtual conference in 2020. I had never traveled to a conference before, and was already in my mid-60s and worried that I’d have little in common with the young adults in the breakout room. Guess what, my fears were completely unfounded. Even with my gray hair, I was included in the animated chat…

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I’d like to invite anyone 50 and older, I have a private Facebook group for people like us. We can discuss everything related to aging with SMA. Come join us! NOTE- There are screening questions.

I’m going to send you a friend request on Facebook.😊

After a major hurricane here in 2016 (tall pine tree through the main bedroom roof, and long stays in a local hotel…argh) we purchased a whole house generator. It’s been a big help durin the subsequent hurricanes and fairly regular power outages in my “urban forest” neighborhood. It is very expensive, but thankfully we could afford it. (It…

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Hi Diana,

If you’re on Facebook you might be interested in a private group that I recently created. Adults with SMA age 50 & over.

https://www.facebook.com/groups/1992651431088271/?ref=share_group_link

Dennis,

If you are on Facebook, you may be interested in this group I recently set up for Adults With SMA 50 & over

https://www.facebook.com/groups/1992651431088271/?ref=share_group_link

Alyssa, 👍

DeAnn,

Yes, I absolutely appreciate where you are coming from. That type of comment is from a stranger is not needed.

Perhaps because I’m a type 3, I don’t recall very many encounters myself with strangers making that type of comment. (Or my memory has faded…)

I can say that one thing that has definitely changed in my lifetime (in the US) is…

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Hi Mark, feel free to join this Facebook group I recently set up for SMA Adults 50 & over.

https://www.facebook.com/groups/1992651431088271/?ref=share_group_link

Alyssa, I know this topic brings out divisions so I’m always careful in how I reply. In my 65+ years with SMA, I’ve certainly had many people refer to me as inspirational. Some are tender memories, for example when my 84 year old father told me that because he could still get himself off the floor, he looked at my life as inspirational because…

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Welcome!

I’ve missed the Zoom meetings, too. I’ve bugged my Biogen FAM to mention it to his bosses. My FAM then said he *thought* those might be resuming…but so far crickets.

Hi Amelia, I have type 3, currently non-ambulatory, and am one of the oldest members of the forum. Welcome to our forum!

😊

Blake, slightly off topic….but what part of Florida will you be retiring to? I live in “northwest” Florida. 😊

Oh golly. This topic really resonates with me lately. My husband and I were very adventurous when we were in our 20’s, 30’s and some into our 40’s. I could literally write a book about all our vacations (and misadventures)!
I also have friends and family jetting around the world this year, and I try so hard not to feel like I’m missing out.… Read more

Hola Kristen, and welcome! It’s nice to meet you. 😊
I’m a senior woman with SMA type 3.

I saw a similar discussion about “Disability Pride” month in the last couple of years.
Personally I approach July more as “Disability Awareness” month.

In fact several years ago I wrote a 5-7 minute competition speech (I’m in a public speaking and leadership group called Toastmasters). It was titled “One in Five” and I spoke on how there are… Read more

Micaela, you took the words right out of my mouth!

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… Read more

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… 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… 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… 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… 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… Read more

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… Read more