1. Right to work, pursue our dreams without loosening benefits need to live

2. Right to attendant care to get up and rest when we want to get up or so go to rest. To dress as we desire to dress.

3. The right to marry without loosing what we need to live

4. The right to date , be sexual beings without additional judgment

5. To exist without…

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Y’all, I’m keeping track of how often and when and where my caregivers clean for the first time, and realising… I don’t know squat about cleaning. 😂

The general stuff, I’m learning from my mum and caregivers themselves. But if you have any advice on general cleaning and cleaning medical/accessibility aids like BiPAPs, please let me know, por…

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3 is a biggie here in Singapore, too.

I can certainly understand your reasoning. I think also that results will vary depending on each individual person. As with any medication, everybody always seems to experience different results as we all have with Evrysfi & Spinraza. I’m definitely hopeful and excited and also anxious and impatient lol. Waiting for the doctor to finish… Read more

I’m cautiously optimistic. I want to give it a year to see if any dangerous side effects surface. Also, I want to know more about the average results. How much do muscles actually strengthen? What does that look like in real life?

I’ve heard of people having trouble getting their formula when it’s on back order. Since Glucerna is giving you digestive problems, I’d ask your doctor if there are other formulas you could try. They may also be able to help you check whether Pulmocare can be covered by Ohio Medicaid and which suppliers can provide it.

Lol I love your first and last one Alyssa. I don’t feel good right now so I don’t have the energy to think of more but I’ll add one at least:

1). The right to get our meds on time so we don’t have to experience withdrawal symptoms from involuntarily stopping one of your narcotics cold turkey.

Ohh I like this game! Let’s see…

1. The right to make jokes about our disabilities and make nondisabled people feel uncomfortable about it (probably my favorite pastime)

2. The right to receive the same treatment as others

3. The right to get married and work without losing our benefits (a biggie in the USA)

4. The right to not want to be an…

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My contribution:

1 – the right to forget medical appointments

(this happened to me recently 😂);

2 – the right to laugh at adulting attempts gone wrong;

3 – the right not to exercise for a day

4 – the right to want more out of life

A few weeks back, I had a fun opportunity to collaborate on a “Gaming Bill of Rights” with other contributors at independent gaming publication Mothership. It was based on the “Reader’s Rights” manifesto by French author Daniel Pennac.

Here are a few examples Pennac listed in one of his books:

1 – the right not to read;
2 – the right to skip pages;

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Absolutely I will! And I’m hoping more people will start posting here as well. I’ve already filled out the enrollment form and now just waiting for my doctor to fill out his portion and have it sent to the Isembyld team to get the ball rolling with running the insurance and everything. Keep me in your thoughts and prayers

I’ve already emailed my primary neuro about when it might be up for approval in Singapore. Definitely looking to be enrolled ASAP. Tell us how your journey goes?

The Devil Wears Prada is a case of the film adaptation being better than the book, I think. But it also comes down to preference? The two mediums are so different. The way we interact with them is different. It’d be pretty boring if I had to sit through hours of monologue 😅

Ooooh. I’ve been meaning to read everything you’ve mentioned. Any highlights?

I wouldn’t say I’m frustrated so much as… Relieved yet wishing we had the technology and knowledge back then as well. We still have so far to go. For example, I find my body feeling much stronger post-period, almost like Evrysdi is reacting to the shift in hormones during cell renewal. I need the explanation for that 😂

Oh! How did you get daily access to a pool?

That’s interesting. The empathetic argument here may be a forgone conclusion for where I live. “In an ideal world…” as people always say. Then costs and resources are brought up. Sigh. It’s like people listen but they don’t.

For the longest time, “being treated like everyone else,” to me, equated to “people ignoring that my SMA exists.” But a friend recently showed me that “treating me like everyone else” could also mean “taking care of my needs the best he can, as he would for everyone and anyone else.” By extension, that could mean different SMA patients…

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Hey everyone! This is very exciting and I’m curious has anyone on here begun the enrollment process? I have been given the green light from my doctor to get the ball rolling on this and I just started the enrollment form. I hope everything goes smoothly and I’m curious to hear who else has begun the process. Any helpful advice or information… Read more

I’m sure you’ve already seen the news on our main website, but in case you missed it, Scholar Rock received FDA approval for the first-ever muscle-targeted therapy for SMA! This is such a great milestone for the SMA community, and it’s only the beginning.

Isembyld (apitegromab) is a monthly infusion that is intended to block myostatin, a…

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That’s such great advice, Susana. I’m always encouraging my mom to take some time for herself. She is always prioritizing those around her and forgets to prioritize her own needs.

Though I cannot speak for caregivers, I can see how difficult that must be at times. Sometimes a little encouragement goes a long way.

Nice! I didn’t realize Project Hail Mary was a book. I thought it was just a movie.

I just read a really good book called Mob Queen. It’s based on the LA, Chicago, and New York mobs in the 1930s. Though the main storyline was fictional, the characters were real. It follows Virginia Hill, Bugsy Siegel, and Joey Epstein. I honestly didn’t know…

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Recently read Circe by Madeline Miller, I like mythology so that was fun.

Currently reading Project Hail Mary by Andy Weir. He’s the same author who wrote The Martian.

Unfortunately, caregivers are profoundly aware that the work never ends. There will always be something we need help with, in one form or another.

I think the answer is going to be different for each person, because what nourishes us personally can vary so much.

My partner loves motorcycles, so I encourage her to go riding with her friends.…

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A few weeks ago, the world mourned the passing of Dolly Parton, and we continue to do so today.

I’m sure her cancer diagnosis took many people by surprise, but what was even more surprising to me was what she said about not taking care of herself.

In an interview right before she passed, she told InStyle magazine that she was dealing with…

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Any other SMAer’s considering or have gotten Itvisma and work with kids? I just got a job at an after school daycare program working with TK-1st grade kids, and right after my first week on the job, my doctor contacted me about getting Itvisma and let me know that, while Kaiser wasn’t recommending it for me and instead wanted me to go back…

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Where I come from, they are always quick to verbalize empathy rather than discuss pragmatic ways to ensure accessibility. For example, nearly all the new stores around me do not have ramps, but you have someone posted at the door telling you “sorry madame” as you try to navigate the entrance.

The more I try to point this out in discussions,…

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Everyone, congratulate yourselves on another SMA Awareness Month survived. Another month of reflection, discussions, celebrations, and sighing at nondisabled people expecting us to tell them everything about SMA even though Google is free. We made it!

Though we all know the work doesn’t end here, I’d like to encourage everyone to take a pause…

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57, that’s great! Keep going and double it!

With prognosis (and diagnosis – this I have) I meant estimation of how much I will live.

As for the test, in Greece we don’t have local SMA clinics, so I would need to look around. I guess it’s possible but it’s not a priority.

You’re definitely not the only one. I think, until very recently, research focused on mobility, breathing, and other immediate SMA complications tied to survival. Now that we have many treatments to address these issues, maybe that’s why research is expanding to a more holistic approach.

I do understand your frustrations, though. At the same…

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So true. I think oftentimes we are clumped together under the “disabled” umbrella, but what people don’t realize is that so many different diversities exist in the disability community and even across similar diagnoses.

Cutting back on social media is a big one for me too!

Something people forget all the time is the diversity within the disability community. Our personal experience has to do with access for wheelchairs or walkers, but disability covers visual impairment, deaf community, little people and all sorts of other issues.

The economic argument is definitely the way to go. It’s always about the money. If…

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I was just talking about this with a few students of a friend today. Nondisabled people utilise accessibility. All. The. Time.

I think the only category where you can’t say accessible = universal is makeup. The type of formulas and packaging people enjoy differs exceptionally from individual to individual. Skin type alone dictates what you…

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Oh yeah, reducing my social media time meant I could READ BOOKS again… Who knew? 😂

I had a gastro doctor come by my ward once and explain to me that weak digestive muscles sometimes means waste doesn’t completely clear. Interesting that you said there’s no studies on that yet. I think I’ll mention this and the rest of what you brought up to my neuro.

If you’re living with a disability, you may have heard of ABLE accounts but never really known how they work.

Generally speaking, an ABLE (Achieving a Better Life Experience) account is a tax-advantaged savings account for eligible people with disabilities. It can help you save and pay for qualified disability-related expenses while potentially…

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Exactly. It took me a long time to feel this way, but I’m glad I finally do.

It’s definitely rare…

I can think of a couple movies that I thought were better but they’re few and far between… And that’s probably because the books were bloated to begin with and the movie might have made one or two changes for the better. Fight Club comes to mind, but it’s been many years since I read or watched it… Maybe The Road,…

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lol

Yeah, everyone seems to be *really* into rock-climbing, pickleball, and/or kayaking. Especially pickleball… Tons of pickleball (I had to look it up).

Haven’t tried any others but Hinge was one that popped up.

Sooo true, Jeff. Can we get this printed on a billboard? The world needs to hear this message.

This is such an important distinction. Disability pride doesn’t mean we have to love being disabled or pretend it’s easy. We can hate the exhaustion, the limitations, the way the world treats us, and still be incredibly proud of the way we’ve found ways to live our lives anyway.

And I really love your point that none of us chose this, but we…

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What, like rock climbing is hard? 😉

Just kidding. Dating apps can be tricky, and I don’t have much advice since I don’t use them, but have you tried Hinge? I know a lot of people have had success there.

Also, yes! By commenting on an old post, you are bumping this to the top on the activity page. So hopefully, more people will chime in.

I haven’t read these books, but I just have to say… is there any TV adaptation better than the actual book? I have yet to find one, and it’s so disappointing! That said, I know books have so much more to offer in terms of information than a TV show or movie.

I hear you. Beyond the cost, I think people often believe accessibility is only for a small percentage of the population, but that’s really not the case. Things like curb cuts, automatic doors, electric toothbrushes, and more benefit everyone but were designed specifically for people with disabilities. It just shows that when you design…

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I know this is another older thread but…

If you’re open to sci-fi the Murderbot series is good fun and pretty light reading. I mostly do audio books, and I think they tend to be around 2-1/2 to 3-1/2 hours each. There’s also a tv series now on Apple but I’ve been disappointed with it so far (s1).

I’m currently hooked on The First Law Trilogy…

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