esther-collington
Forum Replies Created
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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.
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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.
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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.
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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.
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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 breathe better during the maximum relief period of the tablet. I’m not sure if my body has finally got too used to them but probably my breathing is just worse, now I’m having to use the machine more.
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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 it didn’t work well with me, maybe time to revisit that.
For some years, as my breathing has deteriorated, I have noticed that the strong perscription pain killers that I take have helped me breathe better, whether it is because they make my muscles relax I don’t know. I mentioned it to the consultant but he wasn’t keen to discuss it! I’m of the belief that, as long as I don’t over take them which I’m very careful about, whatever helps is a bonus. Have you heard of this before?
Esther
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That’s OK Kevin, glad to be of help.
What’s a Vest Airway Clearance System please? Not heard of that?
Esther
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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.
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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 your difficulty of lengthy sessions of getting comfortable back in the wheelchair but I haven’t found a solution yet.
I have used a Nippy machine at night for over 20 years (I’m 66 years old), and as and when during the day for the last 5 years although I am currently using it much more which is rather worrying.