Hi, and Happy New Year!
I’m not too sure where to start really, but I have joined so I can hopefully be of some use to my Brother.
He is 38 and was diagnosed with PPMS just before Christmas.
He is currently single, has been for the last 5 or so years after the break up of a long term relationship and is currently living at our Mums as his landlord was selling, he is due to move into a new place in the next few weeks, which our Mum is absolutely dreading.
He is a builder and works self employed.
He was diagnosed fairly quickly, after going to a see a physio as he was losing strength in his legs, she immediately said it was Neurological and got him an MRI that week, followed by a lumbar puncture, bloods, electrode testing. He was then diagnosed with PPMS, which was a huge shock.
His symptoms seem to be progressing quickly, and is now having a lot of bowel and bladder issues, and struggling terribly with sleeping, he is also falling quite regularly and really struggling with stairs.
The Physio went to see him last week, and gave him exercises to strengthen his core, she is going back in 3 weeks, he has seen the MS nurse for the first time today, who has told him to pack in the cigarettes. She has also left him with 2 folders of info for him to read through.
He is very very dismissive of it all, wont consider that he may need to change his job or stop driving or slow his drinking down.
He just keeps saying ‘when your time is up, it’s up’ and that he will ‘top himself’ before he ever sits in a wheelchair.
We are a large, and very supportive family, and just want to know how to try and be there for him, without potentially smothering him, or making him feel worse. My Mum is in tears daily (not when he is about) as she knows he means what he keep saying, which is heartbreaking.
I feel so so guilty, as I have RRMS, and have been pretty much symptom free for the last 8 years, I just can’t believe that one of my Siblings would also be diagnosed.
I was in a wheelchair for around 6 months 18 years ago and couldn’t do a thing for myself, but I have recovered amazingly. I just know that he wont, and I dont know what to do or say to try and help him.
I have tried to tell him that I always found the MS nurses to be amazing, as long as you open up to them, and that they will help him manage his symptoms. To which he says ‘there is no cure or treatment, i’ve just got to get on with it’
I fully understand that we are all completely different, as are our symptoms… and some people dont want to be ‘helped’
I just would like some views/opinions/ideas on the best things to do/not do, say/not say? Especially with him being a man!