Zicari

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 another…[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 still…[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 even…[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 chew…[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 have…[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 the…[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…