Hi everyone x my sister has secondary progressive M.S . She is 56 years old and was diagnosed with this awful disease when she was in her 20’s the doctors said it was very mild . Yeah right !! She is unable to walk, feed herself, go to the toilet, bathe and the list is endless. I live next door to her and so I get to help as much as I can and her husband and family are brilliant but the only difference is that they accept the situation and I refuse to.
My mum and I are always hopeful that there will be something that we can find that will make a difference to her life, she has just become a grandma and she can’t even hold him . Has anyone any experience or ideas that they have used or been given , was situation do you have to be on to try new drugs? Will physio help at all ? I do believe that we can help my sister if she was given the support from outside the family, I am hopefully going to a M.S group on a monthly meeting which I have just found and I’m hopeful that someone will maybe give me some suggestions to how I can make a difference. I think this disease is horrific and everybody who suffers from this deserves a medal because it’s just awful x if anyone could help I would really appreciate it x thankyou xxx
Even in your sister’s situation, there is always scope for making things a little easier and nicer for her and her primary carer(s). But I’m thinking in terms of kind, helpful, steady cheerful company and practical support, day in day out. That’s where the real work lies and the little improvements to quality of life are to be found. I think your compassionate energies are better spent there than chasing after a magical-thinking cures that don’t exist.
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Hi Mathew. Really sorry to hear about your sister. Is she registered with a neurologist and have an MS Nurse? You could ask them about any clinical trials although I wouldn’t hold out too much hope . There are some trials looking at remyelination but I don’t know what criteria you have to satisfy to get on these. Have a look at the main section of the MS Society’s website or the MS Trust. Physio might well help ease some of her spasticity . it won’t cure it but might help ease. Have a word with her MS Nurse ( you will probably find d that there is a long waiting list for NHS physio).
Thankyou to those who responded to my initial letter x after getting in touch yesterday on this forum I kept looking for different ideas and new treatments that was due out. It mentioned pipe 307 which sounded so hopeful even though it’s not available as yet but hopefully by the time it is maybe my sister could use it , I don’t know x anything is worth a try right ??? Xxx
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