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MS advice please - Carers UK Forum

MS advice please

For issues related to specific conditions and disabilities.
My wife has secondary progressive ms and the recent warm weather has really had a negative effect on her health. she is no longer able to transfer unassisted from wheelchair to loo. I am constantly having to lift her and assist with toileting every couple of hours.... im exhausted and not getting any help. Contacted MS nurse for advice today and no one has got back to me?I have managed before but my patience is now being tested.... exhausted, stressed and cannot see any light at the end of the tunnel, where do i turn now for a quick response ?
Hello David,

I realise this is a year late but as the weather is likely to be an ongoing issue I hope this will be useful.

My wife also has SPMS which is badly impacted by warm weather. In my wife’s case, it also accelerates the progression of the disease. To prevent future temperature-related deteriorations I installed a ceiling fan and an aircon unit in the bedroom (she is bedbound). I use an accurate temperature gauge to monitor the temperature at which she begins to decline and use the fan and/or aircon unit to keep the room temperature below this at all times. Even if the ambient temperature rises by just one degree C above her tolerance, many very unwelcome symptoms emerge. This has been a very helpful prevention strategy.

Feel free to message me privately if you want to discuss further.

I hope your wife is coping well, and you too.

Best wishes
Peter
Hello Peter
Only just found your reply so apologies for the delayed response.
We do have a ceiling fan in the bedroom but an air con unit is a great idea. Do you use a portable unit or a fixed unit ?

Kind regards

David