I’m a 47 male and have Type 2 - although I feel that it might be Type 3 or in between.

Have had a productive life. Good schooling, two marriages, an able bodied biological teenage child conceived without any medical assistance.

Health wise I am not as worse as I could’ve been. I need assistance with everything but can feed myself. Able to sit with some aids and use a powered wheelchair. Have scoliosis also. Breathing is normal although find it difficult to shake off common colds and flu.

Have not noticed much change in last 20 years and seem to be stable.

Joined up here as having some thoughts of the future and worried for my child if I was not here. Wanted to discuss quality of life with others in similar situation and outlook for the future. Read online that the oldest surviving person with type 2 is 64 years old, therefore a little worried.

Any words?

Hello,

Thank you so much for sharing a bit of your story! I try to avoid looking at life expectancy with sma as we are all very unique and even the doctors don’t know for sure. My life expectancy was 12 at diagnosis yet I’m 27 a type 2/3 and walked until age six.

I think that a positive mindset and a purpose (your child) allow amazing things to happen. I still struggle with depression/anxiety but the more I practice thinking about the future and all it’s positives the better I feel. Counselling has been a huge help for me in managing the fears. But also reach out here anytime you need some support, advice or a pep talk! Community helps make the future less overwhelming.

I moved from US to Colombia S. America so I could afford caregivers. NY advice get out of US, my caregivers are kind, full time and $12 a day.

These are all amazing responses!!! Thank you!!

Am afraid that this is common with all caregivers. Honestly, with the immense difficulty of finding any sortof caregivers at the moment, unless You are not getting essential needs to living met...you might be better off to just accept it at the moment and find help from alternate sources if possible. Frankly, you don't want to do anything right now to upset an attendant as they are impossible to replace ever since the pandemic . Once the world returns to normal and finding a replacement caregiver is no longer harder than finding the lost arc, simply making a checklist of things would like to have done can help. Can always say that the list was more for your memory as you keep forgetting to ask for those things done.It gives the attendant clear expectations and goals and does not make you look like a tyrant.