That’s the first I’ve heard of that. I live in the UK and it was a glimmer of hope on the horizon! Thanks for thinking of us.

I wish the UK had Spinraza, children can have it but it doesn’t look like adults will any time soon. No other treatments available.

I’m going for my first  counselling session on Thursday. I’m abit nervous. My breathing, health and strength have all got much worse in the last 6 months and I’m finding it really hard so am hoping it will help though not sure how.

I have to use a laxative because constipation is a big problem because of painkillers. Sometimes this causes problems and occasionally I’ve had to resort to an extra painkiller because it’s so exhausting to be hoisted an extra time.

Sorry for the delay in replying Kelly. Yes, I live in England. We have the wonderful NHS but unfortunately it is on it’s knees through overuse. My consultant is very good but doesn’t agree with me on this subject! I think the painkillers (Co-dydramol) have kept me going breathing wise for a number of years as I always seemed to be able to… Read more

Thank you both. I remember now seeing a piece on local TV about a child being given a vest – that’s how rare they are here! I will enquire about it at my next hospital appointment because I’m suffering from the after affects of a virus which has made me cough more. I did try a cough assist in hospital once some years ago but the physio said… Read more

That’s OK Kevin, glad to be of help.

What’s a Vest Airway Clearance System please? Not heard of that?

Esther

Hello Kevin

I use an on-screen keyboard (with mouse) on my PC. I’ve tried voice recognition but found it too difficult and time consuming.

By the way, I live in England and adults don’t get Spinraza here.

 

Hello Kevin

I have two 1/2 hour rests during the day and have a “board” with mattress on the bath in the bathroom so that I can cut down on hoist transfers by only lying down when I use the toilet (which is next to the bath). This is rather inconvenient for my carers but they make sure they use the facilities before I do! I understand… Read more