Grrrl, age is a state of mind.

That being said, the reality is that aging affects our bodies more than perfectly healthy bodies. Joints creak more, fatigue sets in earlier, crazy adventures have less appeal. But there’s always things you can do to mitigate those effects.

Like Sherry, I’m a big fan of TCM. I see an acupuncturist every week and…

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I stand corrected! (so to speak)

Reached out to my doctor and he said there is value in getting a DEXA scan. There are some medications that need serious consideration but there are other options available.

Lesson here is ask every question. More information is better than less.

Breathe. Inhale, exhale.

Rinse, repeat.

I understand the inclination to freak out over the newest health complication but the question for me has become: can I do it anything about it? Are there any reasonable strategies to alleviate this issue or not?

Like everything else with SMA, it depends entirely on your baseline health. That said, It’s a…

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Currently reading The Bright Sword: A Novel of King Arthur by Lev Grossman who wrote The Magicians that was on Syfy. Tremendously engaging and fun with a fantasy vibe, can’t put it down.

I see this all the time.

It’s frustrating and disheartening.

Used to get very angry about it, to the point of finding a friendly cop (when I could find one) to write up a ticket.

We have the problem of people “borrowing” grandma’s permit to park in the handicapped spots. But we also have people with invisible health issues like heart and…

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Tried laying a blanket over my legs and tucking it on the sides a couple times, but that was not especially helpful. The body heat I was trying to conserve would escape from my calves. Add our slower circulation and… chilly.

Not sure if I explained it properly. We lay the blanket across the backrest of my legs so that it starts under my knees.…

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I handle this by living in Miami 😉

Seriously, I wear ponchos and I layer thin material. The challenge is having enough layers to be warm, but not so many that it weighs me down.

One solution I found is keeping my legs warm. Before I sit in the chair, I put a blanket across the legs and once I’m sitting, I wrap them up like a burrito. I tend to…

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Sure, medical appointments and care plans are great to have organized. I’ve often thought having an open source medical journal for family members would be really helpful, specially when caring for someone in hospital. Keeping track of what doctors came by, what they said, what plans and options were discussed.

But I want to go beyond that.

I’m…

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I’m glad to hear the ROHO cushion has been helpful for so many people. It was a total bust for me. Every time a therapist suggested it, I tried it with terrible results. Like Alyssa, I’ve been using a custom molded seat with gel layer for many years now, and it has been the best solution so far.

That said, it’s so important to know the…

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Shaking hands can definitely be awkward, it’s a social interaction with a lot of assumptions built into it. That you can reach out, that you can grip a firm handshake, that you can tolerate physical contact. Assumptions most people don’t ever have to question.

Were you the one who made that awkward? No, not entirely. You both did. He probably…

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I don’t technically think that we’re required to put other people at ease, but the practicality of the situation is that it’s on us to let them know what we need. And that applies to social situations as well. For me, this depends on the person and how they are approaching the situation.

Kids are sponges, recognizing things they’ve never…

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The fatigue is such a pervasive limitation that it’s hard to describe sometimes. Growing up, I had a young relative who thought I was choosing not to walk because they couldn’t understand the reason for my tiredness. Also, depression and fatigue often overlap, which makes it difficult for some people to separate them when we’ve been taught…

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Another thing I want to point out in general is that we’re people first. Men, women, gender fluid, gay, straight, trans, introverts, extroverts, nerds, musicians, writers, neurodivergent, scientists, religious, atheists, gardeners, teachers, parents, and more descriptions than I can list here.

I explain this to young parents all the time:…

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Cait,

I discovered my body really likes root vegetables and I don’t get a bad reaction to any of them. My family’s Hispanic so things like yucca and malanga were already a part of our food traditions.

Potatoes, beets, malangas, yucca (cassava), sweet potatoes, radishes, turnips, onions

As they’re high in fiber, they process slowly and don’t cause…

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The fatigue is real. People in the SMA community are really good at glossing over limitations. Even some doctors have had to reset their expectations with me.

Another thing is privacy. I’m 56 and diagnosed with type 2. In the last 10 years, I’ve had to admit there are things I can’t do anymore, that’s been a sucker punch to my ego. I used to be…

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About 25 years ago, I had a severe health crisis. Weirdly enough it had nothing to do with SMA, it was systemic Candida.

That was the worst pain I’ve ever felt in my life. It’s when I discovered acupuncture. When I asked if there was anything else I could do for my well-being, he suggested cutting refined sugars. Honestly, I thought it was a…

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When people apologize for complaining about how they feel I generally respond with some version of, “my experience does not negate yours, you have every right to share how you feel.” I can generally find grace there. That goes double when people share their successes on different treatments.

My first year on Evrysdi saw progress. During zoom…

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Your grandson has the medical diagnosis, but SMA affects the entire family. Especially our caretakers.

Feeling scared about the future is reasonable. It’s one of those situations where knowing more doesn’t always help.

When he was born, could you imagine him at 7? Being a little chatterbox? Having many opinions and questions about the world?…

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I have a couple different strategies like taking a walk around the block, meditation, journal writing. Another one is singing. I’m not very good at it, but it helps, especially if it’s a musical score that I like. Lately it’s been Hamilton or Wicked. Let me tell you why.

It takes the focus off of me to something external. The lyrics in front of…

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At this stage of my life, I’ve been able to look at failure as information. The strategy I was using did not work well for the outcome I wanted. Period. I can even look back and see how not getting something right the first time forced me to be more creative. Acupuncture is a perfect example. If I had found any relief in western medicine I would…

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Some of my interests have been relegated to my own research (I guess you might say it that way) like anthropology and archaeology. I’m fascinated by cultures throughout history and how they interact (define) the sacred.

I did come across this website that might be interesting for some of you. Researchers asking for help from the wider community.…

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Couldn’t figure out how to post on the article itself so I am including the link at the bottom, but I have questions.

Has anybody ever tried to make these braces look a little less heinously ugly? We all know the science and the support needed to create a better outcome, but we’re also talking about kids. Kids who are exposed to impossible…

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Came across this article on spinal surgery that confirmed what I’ve experienced. Both good and bad.

About 5 years ago I met with an orthopedic surgeon to research the options available to me for near constant back pain. He didn’t miss a beat, immediately planning spinal fusion. I was 50 at the time and my body‘s ability to recover from…

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That glass shop really does sound like a nightmare but you got a good story out of it 😀

Hi netu. If the side effects are worse than the issue you’re addressing, I think it’s worth a very serious conversation with your doctor. Big picture is important to consider but that amount of diarrhea affects your physical health and your emotional well-being in fundamental ways.

Remember that our medical teams share their expert advice,…

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Hi Kamil,

Welcome to the forum. We’re a diverse group with different experiences and perspectives. I’ve never lived a SMA centered life myself, but I did this forum to be a wonderful resource.

See you on the boards

That sounds horribly stressful, just takes the joy out of getting to know someone. Might be worth talking to your doctor about an anti-anxiety Rx. Not necessarily something to take every day, but maybe when you’re coordinating the storming of Normandy.

Don’t have any creative solutions for the finances but check and see if your county offers…

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While I don’t know the details of those relationships, I’m assuming they didn’t all end because of your disability.

Relationships can be difficult. Full stop. For anyone.

We all carry our own baggage: family patterns, cultural dynamics, societal expectations, gender norms.

The only thing we can control is how we choose to react or respond.

After…

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I’m currently obsessed with The Pitt as so many of you are. They have a really good balance with the humanity of the medical staff and the crisis of the patients.

Brilliant Minds was great if a little formulaic.

New Amsterdam doubled down on what we want doctors to be. double down on what we want doctors to be.

And the classics: MASH, ER, House

“Have you ever dated when you have SMA?”

I know what you meant to say but the way you said it cracks me up. By definition, those of us who have dated have done it with SMA. Thanks for the giggle.

Dating with a disability has a lot of obstacles, literal and otherwise.

The hard facts of medical prognosis can be intimidating for those who…

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SMA Limbo. What a great way to describe all the variables included in this condition. How many gene copies do you have? When did you present? What kind of treatment or therapy have you engaged with? How old are you? What are your coping skills? Are there other mental health issues impacting your emotional well being?

(And for fun, let’s add how…

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Hi Angie. I hadn’t seriously looked at the ceiling list because of the cost, but I’ll check them out. In recent years, if I need to be transferred at the hospital, we generally bring our lift. It’s bulky but worth it so that I don’t have to be carried. And while some departments do have a lift (even asking ahead of time) we’ve had to wait hours.

Chris, I have a very sturdy manual foldable Hoyer lift that’s lasted at least 15 years. The hydraulics are starting to leak, which means the gasket is worn out. I would rather fix this than buy something new but very few people refurbish the part.

My Hoyer lift is leaking so It’s time to buy a new transfer lift. The sales pitches are… well, they’re selling a product.

That’s where you come in. I’m hoping for real world experience and feedback.

Here are the qualities we’re looking for:

1. Electric

2. Foldable for hospital visits & travel (ERs can’t ever find lifts)

3. Easy to maneuver

350CT…

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It’s an awkward situation. The fatigue that we experience is on a whole other level beyond having a long day. It’s the difference between the ocean and a pond.

That said, I try not to dismiss someone else’s experience. My disability doesn’t discount how miserable someone else feels when they have a cold. It’s not a contest. And most people…

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Diane, we know. It’s a terrible system that forces us to live at the poverty level before qualifying for help and punishes us if we actually have a decent job. It’s set up that way to discourage fraud, but it makes it more difficult for those of us who actually need help.

Ramble and rant when you need to, just saying these things out loud…

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Unfortunately, having SMA does not exempt us from normal life issues.

(Would love to have an upper limit saying, “move along, we’ve got a double helping of challenging health problems and don’t need anymore.”)

Compression socks didn’t work for me as putting them on left massive bruises. Maybe there are new designs now, but I haven’t checked.

I…

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Welcome! Looking forward to getting to know you

It’s absolutely worth having it at night, that’s what it’s designed for in the first place.

And, while I have no doubt that your husband is happy to help, uninterrupted sleep is so important for our caretakers. The relief I felt when I didn’t have to wake anyone up was huge. It does return a little bit of independence back into your hands.

@Lisanne Like Alyssa said, it’s all about the placement. The position that works best in bed is a little farther back than the position when sitting. I also don’t transfer to get in and out of a car and generally don’t wear pants.

One option could be leave the banana already placed and then hook up the canister when you need to pee. But that…

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Pee math is a nightmare. Unfortunately, the doctors never explained why it was a bad idea to dehydrate. I’d ask if they were gonna come to my house to help me go to the bathroom in the middle of the day and that would end the conversation. Might’ve been helpful if they had explained the long-term damage to my bladder.

Then again, I didn’t…

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I was really sorry to hear this. While I only knew DeAnn from the forum, she always seemed to be engaging and interested in other people‘s experiences. As others have said, her sense of humor was always on point.

Death might be an inevitable part of life, but sharing her story also shares her light in a world that needs every little spark.

If you enjoyed Enola Holmes, the sequel is even better. Really fun.

If anyone’s looking for something new to watch, check out Enola Holmes on Netflix, surprisingly fun if you like mysteries.

That’s why we’re here, to ask questions and share experiences

Did you decide to ask your cousin about working together? It could make a good school project for him to present. Extra credit or something.

Ask all of the questions!

After massage, I really notice how much physical energy I spend guarding. There’s a constant underlying tension to my posture & balance as my body is trying to resist gravity. (I don’t know if that’s actually what’s happening but that’s how it feels). So, yes, it helps me relax and it alleviates tension. I do find…

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How are you feeling after they took your wisdom teeth out?

Aside from Pedialyte I only have one suggestion: oil pulling. First thing in the morning you take a spoon of coconut oil and swish around your mouth from 5 to 20 minutes. The texture can be off-putting but tolerable. Swish and spit out.

Dentists generally don’t recommend it because…

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Hey Alyssa. Due to childhood PT trauma I refused anything that looked like therapy for most of my life. Fast forward, a LMT friend of mine offered massage as a birthday present. Completely different experience. It’s now part of my foundation self-care regimen.

Most important thing (as in everything else) is communication. You want to be clear…

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I’ve also been binging The Handmaid‘S Tale on Hulu. It’s chilling how relevant it is to what’s currently happening around the world. The author made a point of finding historical reference for every abuse in Gilead.

Also, not sure if this is common knowledge, but if you have EBT (SNAP or food stamps), you can get 50% discount at any farmers markets. At least you can in Florida I don’t know about other states.