My Brother has been diagnosed with PPMS

Primary progressive MS
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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.

The Physio went to see him yesterday, and gave him exercises to strengthen his core, she is going back in 3 weeks, he is seeing the MS nurse for the first time on Monday.

He is very very dismissive of it all, wont consider that he may need to change his work 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

Thank you.

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Hi Howards87. I was diagnosed with ppms in November, I am 53 and have been struggling with walking for several years. I can understand how your brother feels as there is no treatment or cure for ppms only help with individual symptoms. Decline is inevitable but hard to accept and his diagnosis has been very sudden, most of us are in limbo for a long time and are sort of relieved when we know for definate. I have a partner who accepts my ms and the limitations it causes but your brother is coping with this without a partner which must be hard. All you can do is be there for him and hopefully he will gradually become more accepting and realise that it may not be the life he planned but it can still be a good life. Karen

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I have ppms and someone told me a while ago having to go in a wheelchair to make life easier is like using an electric mixer instead of mixing it by hand.Im in a wheelchair now and it does make life easier. Ppms is horrible and the hardest thing to do is to stay positive but we have no options. I hope you and your family can get through this bad time. Jo.

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…I’ve PPMS and reacted pretty much exactly word for word as your brother.

It’s hard but please think of his words as a positive. Rather than having an “oh woe is me” reaction and approach, he speaks with an inner strength. His words are not spoken to hurt anyone’s feelings but to show that he’ll always maintain an element of control, if need be. Accept his pragmatic approach…and with that pragmatism I would hope he will ask for help in the future if he needs to…it’s still early days…

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Hi Karen, and thank you for the response. You hit the nail on the head when you about him not having a partner, that makes it even more upsetting, as I dont know what I would do without the support of my Husband.

I too hope he will be able to accept that he can have a life after this diagnosis, albeit a completely different one.

I wish you all the very best.

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Hi Jo,

Thank you for your response, I love your analogy!!

So very true!!

I wish you all the very best.

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Thank you so much for your honest words.

It really is early days, and we are definitely not a ‘woe is me’ family! Although he definitely has the right to feel as sorry for himself as he wants right now.

I saw him yesterday, and he is down, but doing ok. Still working, still going to the pub. He has his first meeting with the MS nurse tomorrow, not sure how much he will open up, but from personal experience I know they do an incredible job, so I am hoping he will get some help with managing his symptoms.

Wishing you all the very best.

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I feel like I’m stuck in denial and I’m coming up six years since diagnosis, it’s really hard when there seems like no meds for PPMS. I’m sorry your brother got this diagnosis and so unlucky you both have this rotten condition.

There are a few things that may help though, the jury is still out on ocrevus but it’s still one to watch, I believe my neuro is putting my name forward for a very long waiting list for it, so we’ll see.

Some people find LDN (low dose naltrexone) helpful. I stopped it as I went the trial route but it’s a very low impact medicine and easily obtained privately/online with an MS diagnosis. Quite literally, it helps you produce endorphins so nothing too negative.

I’ve just started taking high dose biotin, not the ‘high dose’ ones you might take for your hair/nails but 100mg x 3 times a day (so about 30 times strength of the stuff for your hair/nails). I’m a bit scared of potential hair madness, just cos mine is very thick and grows like the clappers already! However, I’m finding it quite hassle free and buying 3 months worth cost me just under £100 with postage - there are groups on facebook helpful for that kind of thing.

In fact, like so many others I write a blog and I’ve just set up aa facebook page about #myMuSh

Take good care of you both

Sonia x