[robin-c]

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 didn’t cure me of PTSD though when Hurricane season is in its prime.)

[robin-c]

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 as a disabled woman I was happily married, had a great career and still had a positive attitude (most days, lol). It actually brought me to tears, and still does. I was absolutely not offended.

Another time, at work when I was still ambulatory, my boss sincerely apologized one day for forgetting that it took me almost 5 minutes to get up from my office chair and walk to her desk, even though I was only about 10 feet away. She followed up with something like, “Robin, you do your job and I forget you’re disabled. You’re an inspiration for us all.” Again, I wasn’t offended.

I guess I’ve been lucky that most of the times I remember being called “inspirational”, it’s because those people were saying it “from their heart”. By that I mean they seemed to have gotten a good feeling that day from interacting with me. Even though others may disagree, I can’t find it offensive that someone else’s day was impacted in a positive way. I know that one of my “faults” is to try to see the good in most everyone and try not to be easily offended.

Or maybe I’m just interacting with the nicest people? Who knows for sure? 😊

[robin-c]

Welcome!

[robin-c]

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

[robin-c]

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. It’s hard. Being thankful, for what I do have, can help. Still, reliving our memories is a typical human reaction… especially as we get older (says this gray-haired lady).

Sending Hugs to everyone who has shared in this thread.

[robin-c]

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

[robin-c]

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 visible disabilities but also “invisible” disabilities. Also that age often brings disability- from accidents, strokes, arthritis, etc. No one is guaranteed they won’t become disabled before they die.
I feel that bringing awareness helps able bodied people gain perspective, and hopefully more acceptance of ability differences.

[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 live closer (like in the same city) to the conference locations.

Bottom line, I totally understand how you feel.

 

[robin-c]

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!!!

[robin-c]

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

[robin-c]

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

[robin-c]

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

[robin-c]

Alyssa, 👍

[robin-c]

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 this — my type 2 brother was hardly ever acknowledged by strangers (or medical professionals) in the 1960s. My parents would be asked all the questions: “Would he like ice cream?” “Does he go to school?”, “Is he in pain?” My parents were usually abrupt and replied “You can ask him!” It seemed that the overwhelming perception was that a young person in a wheelchair was also mute or severely cognitively challenged.

Or worse was staring and pointing, or parents grabbing their child’s hand (while speaking softly) as if his disability was contagious or his wheelchair would bite them!

Everyone’s experience is different. Time has brought some changes, but certainly more needs to be done.

Honest Discussions like these, even among our community, can help raise awareness. I still have a lot to learn! 😊

[robin-c]

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

[robin-c]

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.

[robin-c]

????

[robin-c]

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

[robin-c]

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

[robin-c]

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!!

[robin-c]

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

[robin-c]

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. ????

[robin-c]

Amy, thanks. ????

[robin-c]

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.