Helping someone with severe PPMS

Hi all,

basically my mother has been suffering with PPMS since 1990, up until around 2010 she had an incredibly happy and full life she was indepenendent was able to get around in a Manual wheelchair, went out the variety of place cooked for herself etc; her only requirements were to be hoisted in and out of bed and helped to dress by carers.

in 2010 she developed a pressure sore which was spotted by her carers, a fact the district nurses who visited refuted until the sore developed into a grade 4 pressure sore to cut a long story short there were many apologies to my mum and her family and the agreed course if treatment at an MDT meeting was for my mum to go into a care home until the sore healed - she was 44.

my mum spent 9 months in the care home in question and was eventually sent home when social services funding ran out rather than because of a health improvement.

she was sent home and has basically spent the time from early 2011 until now confined to a hospital bed with a nimbus mattress. the time she has being in in her electric chair amounts to weeks over the course of 3 years

All her physiotherapy that helped her to retain movement and let her go about her day to day life has ceased.

the carers now come breakfast,lunch, dinner and evening to washe feed her and make drinks. She is fed a diet of ready meals and is given a sandwich EVERY dinner time because they don’t have time to make nothing else.

my mother has basically been put out to pasture by the nhs and the district nurses she has recurring pressure sores all the time and the nurses response is only to stay in bed

she is losing use of her hands, her hands were something she could always use well now she can barely pick up a sandwich

she is losing her faculties as her only company apart from me is the TV

I’ve recently decided to take charge of making her meals and only using organic produce with plenty of fruit and veg in the hope her health may improve.

my question is, is there any excercises and other activities I can do with someone with MS as severe as my mum who is confined to a bed to try and stop or at least slow her deterioration which truely breaks my heart


Hi LC90,

Hope you are ok. Seen you’ve had no replies. Have you thought of posting on the PPMS Forum, maybe you will get better advice. All I can offer is RRMS and SPMS, sorry.


Hi LC90

Does your Mum have an MS Nurse you could contact, I would have thought she should be getting some kind of physio I’m not certain but I believe we (MSers) can self refer to physio, there must be some way your Mum could access it.

I agree with Andy repost on the primary progressive forum they will have more knowledge of these things.

best of luck

Jan x