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PCP_Tornado23 karma

Quite a few with SMA live rather long and productive lives. Do you see the head transplant as the only alternative to living? You don't seem to be using any ventilator support yet.

Also, as you pointed out, re-attaching the spinal chord is the biggest hurdle. I mean, thousands have spinal chord injuries every year, yet I'm not aware of any current procedure that can help re-attach/repair the connection in humans. You mention an experiment done in mice, has this been attempted since in primates at least? If there was a safe and effective treatment to re-attach the spinal chord, why isn't it offered to those who suffered injury?

PCP_Tornado3 karma

I need care 24/7 too. I'm on a ventilator with a tracheotomy, in a wheelchair. That's great you have enough money form the Government to pay for a caregiver. Each Provinces in Canada have their own Health social programs. In Quebec, there's a program that will give you some money to pay for a carer at home. The cap is around 40-50 hours/week at 10-12$/hours for the carer. So no way someone who needs 24/7 care like me can afford a carer and remain at home. As a result, I am in a old folks home, which totally suck. I'm working on a project to open up a facility for people like me, young adults who need around the clock care. It would be for Muscular Dystrophy and other neuromuscular diseases.

If you know of any such facilities in Israel, I'd really like to know, I'm trying to look at what is being done in other countries. Our facility would be managed entirely by the residents, it would be a very democratic and open residence. We're currently waiting on the State to give us the OK, they would finance part of the services.

PCP_Tornado2 karma

Jordan, I am disabled too with FSHD, another type of MD. I am wondering, if you had to leave your parents are there long term care facilities in Israel for young adults? Or you would end up in a nursing home for the old?

PCP_Tornado2 karma

The use of institutions (nursing homes) for people with disabilities is condemned by many (the UN, advocacy groups, etc.). The research shows that these places are incompatible with human rights and cause all kind of abuse. So, many are working to de-institutionalise people with disabilities in those places.

I don't see the same thing happening for the elderly. Why is that?

Many places have develop programs so that people with disabilities can get up to 24h/24 assistance at home. Shouldn't we strive as a society to eliminate solutions like nursing homes for the elderly which are a recognised as a form of segregation?

PCP_Tornado1 karma

And your caregiver is supplied by who? How many hours/day of care do you need? I'm just trying to work out how it works in Israel compared to here. (Quebec, Canada)