For Those Adults With SMA, How Old Are You And Which Type?
I am 72 with ALS type 3
I Have Had 3 Falls In 5 Days. My Legs Collapse Without Warning And I Crash To The Ground. I Am Frightened. I Donβt Know What To Do.
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.
What SMA Symptom Do You Have That You Didnβt Expect?
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.πππππ
Name The One Thing You Find Most Challenging About SMA.
SMA is very frustrating as we become more and more limited. I miss walking.
What's On Your Holiday Wish List That Could Improve Your Life With SMA?
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.
Can A 23 Year Old Take The At Home Drug For SMA?
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!
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.
Everyone Feels Sad Or Depressed Sometimes. What Do You Do To Boost Your Mood When Youβre Feeling Down?
My son play with my Dogs and watch a lot of funny movies
On A Day When Your Symptoms Bother You, How Do You Find Relief?
Resting is the only aid some days.
What's The Best And Worst SMA Advice You Have Received?
Just be you fight
How Does The Cold Affect Your SMA?
I move to South America for the weather and cost of living. We do not do well in cold!