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Hi Gillette,

We have been told that too. The pressure relieving mattress I have is a solid foam affair - and I really can't sleep on it without getting a painful hip. Hence the topper - works...

Thanks Ellie. I am blessed with 2 nurses in the family - Mags my wife of 46 years and our daughter Andrea - also a nurse.

We have a plan for NIV - being monitored for now on a regular basis and...

Hi Gillette and Ellie,

I have a profiling bed with a 'pressure relieving mattress' - doesn't do much for the pain though. We have put a mattress topper on top and that works quite well.
...

Does anyone one else have problems breathing whilst sleeping on their back or left side. I have tried both to alleviate the possibility of pressure sores on my right side - but very quickly develop...

Seems that getting a truthful explanation for refusal from NHS services is a common compliant. The OT would have to apply to a 'nameless' NHS Panel that seems not to publish minutes of meetings - ask...

Thanks Terry,

Supports my research results too. Hopefully this document (thanks Ellie) will give pause for thought.

Kind regards

Chas

Ongoing saga with NHS. NHS say NO. MNDA need reason for no before offering assistance. Have written to CCG asking for their help. Also have investigation by Neurologist in Rehab Team into reasons...

Hi Originalthought,

Thank you for point. However - it remains a subjective method.

Also- the results depend largely on the type of motor neurone disease - ALS versus PLS versus Bulbar onset...

Exactly my views too Ellie. I also checked with my neurologist in Sheffield - they still use the version I tagged.

Kind regards

Chas

Thanks for that Terry. However I am - was - 6ft - and longish arms.

I will make enquiries though about modifications.

Kind regards

Chas

Hi all,

Neater Robo-arms are out of stock - sadly for me it will be a 4~5 week wait.

In other news: I have always doubted the veracity of ALSFR-S scales since a final number is used to assess...

Thank you all for your replies. I know the 'needy dog' situation - we have a 6 month old Irish Setter - great fun but quite a handful when he 'decides' he wants to play.

Just to be clear it is...

Doblett: are you practicing that age old tactic - the best form of defence is to attack? If you put as much effort into enlightening us as you do by calling us out - then perhaps we might see clarity...

Has anyone had experience or use the Neater Arm Assist?

I had a home visit from Neater via my S&LT and OT - seems a very useful piece of kit for those of us who have lost use of their shoulders...

"...In the meantime, we would recommend that members take a step back from the topic of RCH4, as we feel at this stage, everything that can be said, has been...]

Sort of contradicts your points...

Still can't find a link to the Charity registration in the US - can you help me out with that Doblett?

Chas

I have tried to find where the 'charity' is registered in the US - no luck so far. Perhaps you could help me out here?

Kind regards

Chas

Tried - but no luck. However - I did find this https://www.ncbi.nlm.nih.gov/pubmed/31035235

Did you actually read the post from MND Admin?

Fully support your stance Ellie. Reflecting my views on this topic.

Originalthought - I am being realistic and pragmatic. I can make a spreadsheet say whatever I want - quite easy really. There are variants of MND - some fast progressing some slow progressing. Which...

Wondering what they were specialising in? Who is the Pharma company making the drug? All a little too vague for me I'm afraid.

From the disclaimer "​​Nothing in this web site may be considered to...

Hi Billy

You echo my thoughts entirely. As Dodie Weir points out "it has been 23 years since we 'discovered' Riluzole". I have been asking that question too for the last 5 years. ( I take Riluzole...

Hi Debbie,

Excellent result.

As for postcode dependent - my view is that many medical staff are not benefits advisors or indeed are aware of the benefits system - and so it appears that if you...

Thanks for that. I guess that approval will never be given for RCH4 then - unless a large R&D budget is available - and that none of the big Pharma's seem interested - why is that then?