robin-c
Forum Replies Created
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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 some days. (I know I should be very thankful for living much longer than many with SMA, and I am…..but… I’m also human.)
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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 discussions. DeAnn was poised and welcoming to everyone. To be blunt, I was jealous of the ease she had in her conversations. I immediately sought out her YouTube channel, even though I didn’t subscribe right away.
Meeting virtually with other accomplished adults during the pandemic was life-changing for me. I tried to attend every Zoom event offered -game nights, and chats with SMA people from all corners of the world. Even with all those encounters, DeAnn still stood out.
Just recently she joined a small MD virtual support group (begun during the pandemic by 2 women in TX). She opened up about her life challenges and listened to our/my struggles and successes, too. Friendships blossomed. All too quickly she caught “the crud” as she called it, and missed several Saturday chat group meetings. Now we understand why she couldn’t reply to our repeated messages of concern.
Thank you for providing a safe space here to share our thoughts. I will truly miss DeAnn’s friendship and my heart breaks for all the lost opportunities for her to and the others who she likely would’ve befriended. RIP my dear, sweet friend. My heartfelt condolences and prayers to all who knew her.
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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.)
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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? 😊
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Welcome!
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Hi Amelia, I have type 3, currently non-ambulatory, and am one of the oldest members of the forum. Welcome to our forum!
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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.
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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 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. -
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 friends) but we usually end with a list of our upcoming doctors’ appointments. That brings us closer, though.
And l am very grateful for a Forum like this, too! 🫂
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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.
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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>
facebook.com
Log into Facebook to start sharing and connecting with your friends, family, and people you know.
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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?
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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?
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That’s great. You can search for the group and click on join. I’ll be looking for your request. 🤗
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I’m going to send you a friend request on Facebook.😊
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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
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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
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Alyssa, 👍
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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! 😊
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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
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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.
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Blake, slightly off topic….but what part of Florida will you be retiring to? I live in “northwest” Florida. ????