Thanks DeAnn and Kevin for checking on that for me.

The response was to set my email client to basically SPAM the messages. I already knew I could do that, and how – I just figured there would be a profile settings page to opt in and out of different types of notices. That way I’d still be notified if there was a private message… Read more

Heather – you’re spot on, which is why I don’t let myself get offended by the the things people say… especially when they’re just trying to be nice. I also think microagression theory is bunk. There’s no reason to invent new ways to be a victim of society.

Having said that, it can be amusing to have fun with people in order to set them… Read more

I have had 1 shot of Moderna so far. My next is in three weeks.

The injection itself is easy and painless.

About 24 hours after the shot, I had a rough night. I had a headache, what felt like a mild fever (I didn’t take my temperature though), and some chills. Also my arm was sore at the injection point. I had no breathing issues. I had… Read more

Sorry if this is off topic everyone but I didn’t know where else to post it. I tried sending a message through the help form but it didn’t work for me.

Does anyone know how to turn off email notifications? I get one when new topics are posted. I tried looking through profile settings but I can’t find anything.

There are good points to be made on both sides, but I agree it’s frustrating.

One of the issues is that it – believe it or not – it was often easier back in the day to convince a private business owner to make an reasonable accommodation. I remember once when I was a kid, my mother told a restaurant with a step that we were eating at… Read more

I called accredo and asked if I could give that stuff back every month when they drop off my shipment

they said no 😆

Just took my first dose!

Guess I’m in the club now. No strange feelings or effects so that means my anxiety is holding up just fine – which is all I was really worried about. I’ll have to wait and see on the GI issues which was another worry, but I’m ready for that if it happens.

I’m a little disappointed that it’s been 30 minutes and I… Read more

Alyssa,

I’m using an older iPad (about 3 years), but with the IoS updates I’ve been able to use it with a bluetooth mouse!

The experience isn’t perfect, sometimes I have to reach for the home button, but otherwise the new feature has made it possible for me to use it.

sweet! still waiting for my turn :/

No I haven’t used them. After your post I was trying to find something similar to what I had before – these looked pretty close.

If I were to survey 100 random people and had them put me in one of those two bins (attractive or unattractive), the vote would not go in my favor. I can’t ignore that.

It’s not a pleasant thought, but it’s not something that I get down on myself about. There’s not much I can do about it. I can dress, groom, and present myself well, and… Read more

Two to look at:

Hammerhead handheld shower head

or (much more expensive)

Hansgrohe Raindance

I like that!

I’m tired of wearing just Crocs 🙂

I may give them a try

Alyssa,

Do you hold the shower sprayer yourself or does your caretaker?

For me it’s always a trade-off between the size/weight of the thing and its features. They have some nice ones with a good, adjustable spread but they’re bulky and heavy usually.

I hope I’m not ruffling any feathers or being too controversial here, but I think one of the biggest problems we have in the world today is a tendency for people to shut out views that run counter to their own or to the prevailing view of a group with which they identify. So I’m just going to offer a different perspective for people to… Read more

It’s funny you mention that. I had a pretty hard crush on a girl with SMA when I was a much younger man. She never let me get one millimeter beyond the friend zone. She always had able-bodied boyfriends. I never tried to get an explanation because I didn’t want to be a creep. I just chalked it up to another in the long line of rejections I… Read more

perhaps the “compliance” issue has to do with safety… like scratching one’s head with a Jaco?

I’m signed up! Decided to start Evrysdi – should have my first shipment by the weekend.

Quick question,

For those of you who have taken it, what’s the very first dose like? I get anxiety whenever I feel something weird going on in y body, but I can handle it better when I know what to expect.

Thanks again DeAnn for giving your angle on this.

I pretty much agree with the “what do I have to lose?” mentality on these treatments. They certainly seem safe. I think I’m just overcautious when it comes to new medications.

Doc cleared me to start when I want. I’m going to chew on it a bit longer and I’ll keep you all updated when I take… Read more

Thanks for your perspective, Alyssa. I agree that it’s worth a try, I could always stop treatment. It’s just so new and I guess I’m naturally cautious.

Thanks Yvette for the input. Heartburn I can deal with… it’s the reports of Montezuma’s Revenge that concern me. Regular diarrhea will affect my independence. I’m going to continue monitoring other peoples’ experiences for a while.

Your phone analogy is perfect and very helpful!

Although it does remind me of all the girls that hung up on me over the years…

Today I’m doing my strength evaluation test with a PT and having my first discussion with a neurologist about Evrysdi. I’m not even close to making a decision yet. To me it’s mostly going to be a cost/benefit analysis. I passed on Spinraza because of the risks of drilling into my spine, but obviously that’s not an issue with risdiplam. What… Read more

I just started my process this week. Getting rid of my 9-year-old Permobil for a Quantum Edge.

It generally takes me at least a month to adjust to a new chair… it’s mostly about armrest and headrest positioning.

Good luck !

Yikes. Diarrhea may be a deal breaker for me.

In trying to decide whether to begin a treatment (for any of the available new drugs), what I really want to know is whether or not adults are actually gaining or regaining any practical function. As an example, up to about 4 years ago I could shave my own face. It got harder and harder until I had… Read more

That’s awesome.

I want to get it just to ease my anxiety. Every time I feel something even slightly off I think I got da rona. I really think the risks are minimal, but I understand why some are hesitant with how fast it came.

Waiting for my turn.

That’s encouraging to hear. I’ve had this idea in my head that if I caught it I’d be toast, and it’s been causing me a great deal of anxiety. Just knowing adults with SMA have survived it makes me feel a bit better – but I’m not going out to party just yet ;).

I look forward to hearing how your injection goes.

You’re 41? Never would have… Read more

Thanks for a great summary of treatments, I’ve been looking for something like this!

A few years ago I opted out of getting Spinraza because one of my fusion rods was blocking the injection site and they said they would have to drill a hole in my spine. I said no thanks.

I’ll be consulting my neurologist soon about Evresdi. I’d like to see… Read more

Hello all,

I’m new to the board, and I’m sorry if my first post is a bit morbid.

I’m in my 40’s and have SMA type 2. Like many of you, I’ve spent the past year hiding from this virus. I’ve been wondering how people with SMA, particularly adults in my category, are doing in terms of catching and surviving the virus. I’m obviously scared to… Read more