For Those Adults With SMA, How Old Are You And Which Type? | mySMAteam

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217 questions

For Those Adults With SMA, How Old Are You And Which Type?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

I am 72 with ALS type 3

posted September 22, 2023

I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Don’t Know What To Do.

A mySMAteam Member asked a question πŸ’­

The doctor said to do balance and strength exercises but that wont help with atrophy. Do I visit a neurologist for advice or give up doing things in the house like preparing meals and washing up.

A mySMAteam Member

Hi Sue, that's great news. I am seeing a physiotherapist once a month at present and doing gentle exercises to keep upper body strength going. Finding it hard to keep doing regularly and also have had… read more

posted October 24, 2023

What SMA Symptom Do You Have That You Didn’t Expect?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

Please understand I'm not bitter, just frustrated. Truth be told, I'm grateful that God has been very good to me. I am now 72 years old. Doctors told my mom I be lucky to be 12 or 14.😁😁😁😁😁

posted October 31, 2023

Name The One Thing You Find Most Challenging About SMA.

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

SMA is very frustrating as we become more and more limited. I miss walking.

posted July 21, 2023

What's On Your Holiday Wish List That Could Improve Your Life With SMA?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

Friends , family and attendants to all be healthy. I am in constant fear of someone falling ill or current health conditions causing greater havoc. Sadly, that is not something can buy.

posted December 23, 2023

Can A 23 Year Old Take The At Home Drug For SMA?

A mySMAteam Member asked a question πŸ’­

My son is almost 23 and an SMA Type 1. He has not wanted to do the spinraza but we are interested in the at home drug but not sure if people his age have taken it and what the outcomes have been. Any info would be much appreciated!

A mySMAteam Member

I've been on Spinraza since 2018. I feel it's the best for me. But you should ask the neurologist. Even seek out a second opinion. I'm sure this wasn't the answer you were looking for.

posted February 4

Everyone Feels Sad Or Depressed Sometimes. What Do You Do To Boost Your Mood When You’re Feeling Down?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

My son play with my Dogs and watch a lot of funny movies

posted June 23, 2022

On A Day When Your Symptoms Bother You, How Do You Find Relief?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

Resting is the only aid some days.

posted May 17, 2022

What's The Best And Worst SMA Advice You Have Received?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

Just be you fight

posted February 19, 2022

How Does The Cold Affect Your SMA?

A mySMAteam Member asked a question πŸ’­
A mySMAteam Member

I move to South America for the weather and cost of living. We do not do well in cold!

posted February 5
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