Saying hello - partner recently diagnosed with PPMS

Caring for someone with MS
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Hello, I’m Claire.

My partner has recently been diagnosed with PPMS and I’m here to get informed and see how others cope, both sufferers and their support networks. Any pointers for a good place to start (beyond reading up on PPMS, which I am doing) would be welcomed as it’s all a bit overwhelming!

Thank you

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hi claire

try your nearest ms therapy centre.

ask for any leaflets they have and ask about the therapies on offer.

someone on the staff there will be able to help you.

if your partner wants to start going you could accompany him and have a therapy yourself.

carole x

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Thanks, Carole, I shall look into that x

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Hi Claire,

My husband has had PPMS since 2003. He was lucky enough to have a Great MS consultant at our local hospital who he sees once a year however he is available to see before that if any issues. He also had a good Ms nurse and she can be a great help to put you in the right direction for things.

All the best.

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Hi Claire, my hubbie MS nurse has been a great source of support not just to him but to me also. We go to appointments together to make sure he doesn’t forget to discuss anything and that he listens to the positives too! She has put us in touch with various specialists and organisations over the years. All the very best x

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Hello anon. I found your message very sad. I really feel for you.

I am the disabled one in our house and my hubby is my primary carer. I have 2 carers who come in to do my personal care, plus they take me out and on short breaks.

Without this help our relationship would suffer greatly…Not that is fantastic, but it could be worse.

Does your husband have an MS nurse, who you could talk to?

If he only knew how his life could be much improved by letting carers help, you would all benefit.

Pollx

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Hi Clare, do you think you could both use the help of carers coming in? We’ve had this help for over 5 years and would not cope without it.

I pay for it with Direct Payments. If I can offer any further information, please ask.

Pollsx

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Boudica, thank you for your reply. We are not at that stage yet, but I would certainly be open to that myself, having cared for my ex-husband after his heart attack and knowing how much being a carer can take. Not sure how my partner would feel but as I say, it is early days for us. Thank you for your thoughts :slight_smile: x

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I had to go behind my hubby’s back to get the care sorted it took me 2 years before I dare go ahead with it. He soon got used to it.

Pollsx

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Thanks for your comment. It’s been about a year since we saw the MS nurse but I know she is only at the end of the phone. I think I’ll just have to work on suggesting some help.

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amitriptyline is an anti-depressant which also works on some ms pain.

it has the added benefit of cobatting anxiety.

carole x

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combatting (damn numb fingers)