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Please help me help my Brother

Hi,

I joined the forum and posted back in January as my Brother (38) had recently been diagnosed with PPMS.

Lots of wonderful people gave me some great advice, which was mainly to give him space and be there for him when he was ready to talk, or ask for help

It’s now nearly a year since his diagnosis, which happened SO quickly.

He is still in complete denial, and all he will say is ‘I am f***ed and there is nothing that can be done’

He lives on his own, and is single.

He works, in a manual job, and is still trying to work everyday. This is leaving him completely exhausted, and he spends Friday - Sunday night lying on his bed watching Netflix.

He used to go out most Friday nights, but over the last few months this has become too much for him.

He is still driving.

He has his appointments with the MS nurse, and he says he is ‘fine’ when she asks him.

They have offered him counselling sessions, which he isn’t interested in.

His Neurologists have discussed a potential ‘treatment’ with him, which is a 6 monthly infusion.

His response is ‘whats the point’

Over the last few weeks he has become increasingly sad, which breaks my heart.

I was diagnosed with RRMS in 98, but, have been so incredibly lucky, to have next to no symptoms for the last 16 years.

I feel so guilty that I am ok. But this isnt about me.

Hes been staying at our Mums, on and off for the last few weeks, he gets in from work, lays on the bed, watches TV and goes to sleep.

He’s in a lot of pain and discomfort and suffers with spasms and bowel problems. He fell over at work last week and really hurt himself. He said he has stopped going out as people stare at him

I would love to be able to help him, in any way. He isn’t a talker and hasn’t ever been. But I think that if he went and spoke with the professionals who are offering him support, it could help him?

He just says to our Mum & I, that if it gets much worse he will top himself.

What can I do to help him, support him, give him a reason to live?

Hi, it made me feel reading your message, your message says so much about how you feel about your brother. He is lucky to have you . Sometimes the hardest thing for us is watching our loved ones suffer . It’s a horrible helpless feeling that we have .for a few years I’ve struggled with bad health and issues affecting my children but it feel terrible to see my sister suffering, her son is very poorly not with ms but another illness. I felt I wanted to take her pain away but all I can do is be a listening ear and shoulder to cry on. But you know having someone who loves you and will be your rock at the time you need them most even if you cant do practical things is worth everything. Take care Michelle and Frazer xx (assistance dog)

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Thank you so much for your response xx

Hi

i think I may’ve responded about your brother last time. His attitude sounds a bit like mine …without the Netflix! Personally, despite everyone’s best intentions, be they professional or family, I find only speaking to someone who is in the same boat and can really understand, is the most worthwhile. But only then on a rare occasion.

Mind you sounds like he has been given the opportunity to try the “o” drug first one for PPMSers so worth following that up.

All the best…

Your post says how much you love your brother. I have ppms plus other autoimmune conditions, live on my own, have no relatives here, I’m frequently without hope so ending things is never far from my thoughts. As my condition progressed, the number of friends dwindled & I am now physically unable to finish things. As advised earlier, make sure he knows he is loved, a phone call, email or flying visit, low key, undemanding. Also kindness. He will talk when the time is right for him, or he may not be able to, be prepared for both scenarios. Moral support is priceless. Good luck my friend, go gently on yourself, you could be my brother anytime!

Hi. Your post really touched me as I remember a few years ago, before I was diagnosed and trying to cope with my life feeling like I was feeble, pathetic and with a touch of hypochondria, I was very suicidal, I’d given up. I had to see my GP about an infection or something similar and she started just talking to me, realised how depressed I was and started me on anti depressants and sent me for counselling.

Her intervention literally saved my life, but her kindness and understanding got me talking whereas anyone else I’d been in touch with just got the “I’m fine”. When the time’s right he’ll talk to someone, but antidepressants really help me. Unfortunately there’s not much else I can recommend. You’re doing the right thing by not avoiding him, but a trip to the GP might help if he’ll go.

It’s not an easy illness to cope with and after diagnosis we all react differently, and this can last for a long time.

Take care

Cath

Thank you again for your comments, he has now pretty much moved into our Mums, stays there 5-6 nights a week, although he still has his own place.

We are all trying to maintain contact, and a sense of ‘normality’ as he doesn’t want anyone to treat him any differently.

Several of his friends have contacted me this week, saying they haven’t been able to get hold of him, so we are all trying very carefully to make sure he doesn’t cut himself off from everyone, as I think this would be a dangerous place for him to be :frowning:

Thanks Cath, Mum is desperately trying to get him to the GP or the MS nurse to talk, he has never been a talker, so doesn’t seem why he should be now…

Its so difficult as I think it would help him…

OH NO i just wrote a ton of stuff. I forgot to post it.

Your brother needs help he is very depressed. Maybe your mum can chat to GP about him but i think he is shutting down.

see if you can get him to join us.

xxx My new hobby which is stopping me going insane.

https://www.youtube.com/watch?v=z84PnlZyoiY&t=171s

I have bought myself a wildlife trail camera and now learning how to edit a new skill for an old fart of 68 lol.

but there is life after a diagnoses, all he can see is black.

I would love to chat to him i know its against rules but someone in the same boat needs to talk to him, shake him out of this.

Is there something else going on, has he recently broken up with someone?

He is lucky to have a good family but he might not need molly coddling right now but a good shaking up.

you said…

We are all trying to maintain contact, and a sense of 'normality’ as he doesn’t want anyone to treat him any differently.

BUT you are. How did you treat him BEFORE he got his diagnosis?

It seems to me everyone is fussing over him and mollycoddling him and tip toeing around him . Is this NORMAL for him and his family?

He has PPMS he is obviously still working and can drive. at the moment he is depressed and the more he is reminded of it the more despair he gets if that makes sense.

He needs to be doing things if he is staying at your mums on what conditions? Maybe your mum needs to put her foot down. If you stay here you have to pay your way, take the trash out whatever but make him feel useful.

the cotton wool needs to come off, and a plan put in its place. Nothing wrong with coming home from work and watching netflix and chilling out. He is tired. Its normal for a lot of people who do a manual job when they get older to feel too tried to be bothered to go out with mates. Maybe his mates are treating him differently? He fell in front of work mates? that must have made him feel embarrassed but hey lots of people fall at work i used to do the accident reports when i worked in an engineering company and believe me not a week went by that someone didnt trip over something we even had a broken leg it was more down to BAD RISK ASSESSMENTS then any illness. trip hazards etc.

BASICALLY it can be NORMAL for someone to fall at work it doesnt have to be down to a disease is what I am saying.

but i would be worried about his state of mind so it needs a bit of clever thinking about, i do think ocrevus could help him as it would show there are things out there to help us, we havent got a terminal disease.

I support several people on facebook with PPMS and we have a lot of fun and 2 of my friends go on holiday and lead as normal lives they can, one is taking her daughter to sri lanka this weekend, my friend has PPMS.

xx sorry i have lost my puff. xxx