My Brother has been diagnosed with PPMS

[Howards87]

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!

Thank you.

[Ssssue]

Hello

I don’t have PPMS, but an ever changing diagnosis of RR/SP/Relapsing Progressive. But as I’ve been unable to take DMDs for most of my 22 years with MS, I can’t walk more than a couple of metres with a walker so am a wheelchair user almost 100% of the time and have been for 7 years.

I hated the thought of the wheelchair, when I first used one on holidays about 9 years ago (when I was about 42/3) I was embarrassed and didn’t want anyone to see me using it. Times change you though. Once I was unable to walk at all, the wheelchair basically became my legs. It’s enabled me to leave the house, go on holiday (even to India, twice), meet up with friends and in general, just have a life.

Although there are no DMDs for PPMS, there are things that will help. If he sees a bowel and bladder nurse, he can get help with some of the issues that are plaguing him. Physiotherapy will help too. At least he is still young and hopefully will have a decent muscle base to begin with, so physio exercises will help. It’s not all about legs anyway, it’s hand and arm movement that is massively important, and core strength. If he works now to get/keep that strong, then he’ll be in a better place for the future.

If he is falling a lot, it’s important for the physios to work out why. Is it leg strength? Or foot drop? Or are the messages just not getting through to the appropriate muscles? Some of this can be helped, leg strength can be worked on, slowly. There are many options for foot drop (orthotics, FES, simple foot-up devices). And while he’s resistant to a wheelchair, crutches of the non grey NHS type are a better option. Maybe if what he needs is just help to stabilise him and take some of the strain from his lower body, one or two crutches could help.

There are also drugs that can help, he could talk to the MS nurse or neurologist about symptom management. Plus perhaps he should see his GP about something to help him sleep. Fatigue, as I’m sure you know, is a killer, and sleeplessness only makes it worse. So maybe the GP can help.

I suspect that having a nurse turn up and tell him the first thing he should do is pack up smoking, and drink less has made him absolutely dig his heels in. It did me. I hated anyone telling me to stop smoking (bad enough with the bloody government!). I finally gave up just over 7 years ago, just in time before the big relapse that put me in hospital, rehab unit and wheelchair. But I still spent a lot of years with MS smoking. And did a job where the culture was all about drinking a lot, socialising with colleagues and clients. So being told ‘you have progressive MS, it’s only going to go downhill from here, oh and stop smoking and drinking’ would drive anyone to immediately spark up another fag and pour another bloody drink. And think about what to do when things inevitably get worse.

You’re dead right as well that being a large and supportive family, trying to help isn’t going to. It’s more a case of ‘I’m here if you want help or to talk about it’ and letting him get his head round the crappy luck that’s brought him this disease.

You could suggest he has a look on here, he doesn’t have to join (or could with a totally anonymous name so he doesn’t feel you’re looking at what he’s saying), he could just read about other peoples experiences. Maybe when he’s ready he’ll look for some fellow feeling, but that might not come from a sibling who might also have MS, but the RR type, and one who isn’t having too bad a time of it at present.

I do feel for you, and your family. All you want to do is help, and the truth is, you can’t until he asks for it.

All the best.

Sue