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How To Get More Energy?
Hi, good morning guys, I am going to change my life, and planning to increase my body weight, but I have no idea on Sma diet, I am not being over 25kg although I am 23 years old already
Can someone who see this post can understand my situation and give a suggestions to me?I am using a Naso-enteric tube for almost 3 years now. Doctor said I will get aspiration pneumonia if still use my mouth to swallow food. I am drinking the milk (brand: Ensure Gold) only with 200ml/4 scoop of powder every 2… read more
Hello, I am a mother of a child that had type 1 sma. When she was 15 months old she was diagnosed and the drs told me she would not make it to 2 yrs old. They were wrong. She passed away at 12 1/2 yrs… read more
Even Though You (or A Loved One) Suffer From SMA, Would You Change The Life You Have?
No wrong answer I'm just curious how others perceive this situation we are all in.
The one and only thing that I would change would be the fact that it took my husband at such a young age(47) very quickly and unexpectedly. I would have been very adamant about the doctors approach… read more
What’s The One Thing That's Helped You Most With Fatigue?
Watch what I eat a lot healthy food. In while I will have hamburgers with fries to say you are you funny person.
Has Anyone Experienced A DVT? I Have A DVT Blood Clot In My Lower Left Leg.
How long does the DVT take to dissolve with blood thinners? What did you do to help alleviate some of the pain?
I have had the DVT in my leg since May 4. They’ve checked it in August and they’re checking it again next week. They said it may never go away but all I have is blood thinners for it. They never… read more
Does Anyone Now Anything News About SMA-LED And How Many People In World Have This Disease?
I have SMA-LED
Anyone With Type 1 Sma Child Who Got Zolgensma?
Yes, at 8 months old. His legs started moving in 2 days. He can now swallow, stand independently, walk short distances, and started riding a bike with training wheels. My general answer is to reply… read more
Covid Booster
So, I am very confused as to whether I should get a 6th covid booster just approved by the FDA for individuals over 65 and immunocompromised. Is nothing on the CDC website about SMA, I am not entirely sure my regular doctor fully understands SMA, and the place I get my shots from seem confused and are hesitant to give shot without some confirmation. Am about to go on vacation and I really don't want to have to wear a mask at the beach. I have SMA type 2. Do I qualify for the latest booster?
I've had 5 also. Why, have I had 5? Because all THREE of my doctors have TOLD me to get it. Who am I going to listen to? The BS that's on the news. Or my doctors who care for me. That's an easy… read more
Has Anyone Had Any Sudden Jumps In Weakness?
Yes
Power Wheelchair Recommendations
So...part of me knows this is a ridiculous question, but I am hoping that maybe there have been changes I am unaware of. It is that dreaded time when I have to begin to apply for a new wheelchair.
It use to be I would look forward to the process. Use to be every new model of wheelchair would be better, drive further, be faster, overall better. That has not been the case however the last twenty years. The wheelchair I own twenty years ago was in every way better than the one ten years ago… read more
Hello Me I Ask Everyone Here..what Your Straggle In Life Being Sma
I'm ashamed of US policy for the dialsabled. The richest country ever and the marginalize those who are the most marginalized in the world. UK has to watch airports because if you bring in disabled… read more
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