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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Sexual Relief

Sexual Relief

For those of you that are single...What do you do to get sexual relief? I know it's a bit of a personal question, but as I get weaker and lose the use of my hands, I'm struggling to get this taken care

posted 3 days ago

How Often Does Everyone See There Neurologist, Especially Type 3?

How Often Does Everyone See There Neurologist, Especially Type 3?

posted 3 days ago
A mySMAteam Member

Besides examining me to see my level of strength, she writes a prescription for PT. I’m always trying different types of PT. I also get an upper limb module test to see if I’m stronger since taking… read more

posted 2 days ago

Toilet

Toilet

Hi, I wonder how girls go to the toilet in places where there is no hoist and there is only one carer. I (or at least my carers) find it difficult to take of pants, because I cant lift myself.

posted 3 days ago
A mySMAteam Member

I believe they make cups that transfer the urine to a gravity bag. You’ll have to shave.

posted 1 hour ago

What Advice Do You Have About Shopping For Clothes?

What Advice Do You Have About Shopping For Clothes?

posted 5 days ago
A mySMAteam Member

I saw on fashionbellee insta that there was a jacket with the zipper reversed, that was an existing jacket, but i consider reversing the zipper when i buy a new jacket. Because carers have struggles… read more

posted 3 days ago

Tremors And SMA Type 3

Tremors And SMA Type 3

My doctor believes I have SMA Type 3. Recently, I have discovered I have tremors. I think I've always had them, but didn't pay attention to them, blowing them off due to being hungry. However, I've also noticed that I have them when I'm not hungry. I don't always have them and they are not violent, but are annoying at times. 😆
Is this one of the many symptoms of SMA Type 3?

posted 6 days ago
A mySMAteam Member

Lol Dennis! Love the analogy.

posted 1 day ago

For Those That Take Treatment For Your SMA: What Has Been Your Most Noticeable Change, If Any?

For Those That Take Treatment For Your SMA: What Has Been Your Most Noticeable Change, If Any?

i.e Spinraza, Evrysdi, Zolgensma

posted 6 days ago
A mySMAteam Member

I have been on Evrysdi since about August. So far the biggest change has dealt with digestive issues both positive and negative...pretty much balancing out lol.

posted 3 days ago

How Do You Thank Your Family And Friends For Their Support?

How Do You Thank Your Family And Friends For Their Support?

posted November 23
A mySMAteam Member

I make sure to verbally thank them and I also thank them with a good meal.

posted 3 days ago

Mac Users - What Assistive Technology Do You Use To Control Your Desktop?

Mac Users - What Assistive Technology Do You Use To Control Your Desktop?

I recently bought my first desktop computer and I am so excited! I am currently using the magic trackpad, the built-in on screen keyboard, and voice control. Is there anything else I could be using to make things more efficient? I am on my computer pretty much all day, and I'm always looking for ways to be more productive while simultaneously reducing my fatigue.

posted November 22
A mySMAteam Member

I have been using Dragon Naturally Speaking for years, and the newest version is much better. I also could not recommend Hot Virtual Keyboard enough. This is an amazing app that lets you customize… read more

posted 4 days ago

Hello Everyone🤗For Those Of You Who Didn't Have Spinal Surgery Or Fusion: Did You Notice Some Kind Of Stabilization In Scoliosis Too?

Hello Everyone🤗For Those Of You Who Didn't Have Spinal Surgery Or Fusion: Did You Notice Some Kind Of Stabilization In Scoliosis Too?

I'll soon start taking risdiplam and I didn't get surgery (don't know if I still can get it).

So I was wondering : given that scoliosis in sma is due to muscle weakness, did anyone of you notice some stabilization of scoliosis while on the drug?

posted November 16
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