Friend's DP diagnosed with motor neurone disease

[Gentl3manJack]

And I'm supporting her as much as she needs in any ways that she needs, but I know virtually nothing about MND.

His symptoms are lack of feeling in the right hand side of his body and he's very unsteady on his feet. I think the symptoms are relatively recent - the last 3 months approx. I don't know the exact type that he has.

My grandfather died of the same thing but that was back in the mists of time and I can't really remember a lot about it. So my questions are:

Life expectancy?
How is it likely to progress?
Will they need to have mobility aids installed? Grab rails and stairlift, etc.
What kind of help and support is she likely to need from friends?

I'm worried that she will really struggle to cope. Going down to just one driver in the family, getting him to hospital appointments, caring for advanced needs as time goes on.

I suppose I'm just asking how I can help, really. The diagnosis was made last week so the whole family is in shock.

TIA for any advice :)

[bookish83]

I'm sorry to hear this. It really is a terrible disease. It strikes too many young people.

The MND association is a wonderful resource. Your friends will need to look at advanced care decisions early on, and it is a shock in itself to get the diagnosis let alone think about the inevitable progression.

Times vary but it is a progressive disease and can be quite fast for some.

Do you have carer's link or carer support in your area? Could provide support for transport, respite hours (in the future) etc.

Just being a friend and supporting through the grief that you go through knowing there is no cure at all would be a valued thing x

[bookish83]

Sorry to add- physically he will eventually not have use of his body, communication, eating etc. Generally minds stay intact, though there is evidence to suggest it alters people's cognition, it is not the worst symptom.

[Gentl3manJack]

Thank you. I'll pass on those links to my friend. She works full time as a vet (owns the practice) so I'm not sure how much time off will be feasible 😞

I didn't realise that cognitive function could stay pretty much the same, that's awful. I had in my head the thought that mind and body would go downhill together. He's only 51 😞

[bookish83]

In my experience some changes do happen like the higher cognitive functions but generally people describe it as trapped, yes. It breaks my heart.

Counselling or health therapies should be offered too as sometimes by the time people have accepted the changes they are already happening eg speech.

I'm speaking generally. You sound like a very good friend and they are lucky to have your support x

[Gentl3manJack]

Thank you. It's just so unbearably sad that my friend (indeed us all) is going to have to watch his (possibly rapid) descent.

She lives about 10/15 minutes from me so I'm very much on the doorstep if she needs me. And there will always be the offer of coffee/wine at my house 😂

[Mythreeknights]

Hi OP, sorry to read about your friends DP. My mum had MND and it was just 8 months from diagnosis to her death. Hers progressed very rapidly and it was harrowing watch it consume her so fast. 5 months post diagnosis she was almost entirely locked-in with just some hip movement and some lower leg movement left. It was a very difficult time. I'd say given how quickly things can progress (she was unlucky; I think many with MND have on average 3 years) it is worth getting wills/financial matters sorted out ASAP and then they can really focus on making happy experiences and trying to enjoy each day. The MND Association and MND Scotland are both fantastic charities and worth reaching out to but he will also have an MND specialist nurse visit (he should have, anyhow!). Regarding the house and car, I'd say from experience if they can rent a stair lift and a disability car, it's worth doing that just to keep independence going as long as possible. Also, the riser-recliner chair was brilliant and there's a 'feeder' gadget that literally flicks food into your mouth if your arms/hands have lost their ability to move. A dark sense of humour is required. Sending and hope the next few months have light as well as darkness for your friends.

[BBear]

My stepfather had MND and lived for 18 months most of them with a good quality of life. Things that helped were an electric bed and mobility scooter (we hired but doctors should be able to advise). Occupational therapy have all sorts of devices that make it easier.Take all the help you can get from the community nurses and friends. Sadly, make a will now. DO NOT wait - he was still mentally fine, sometimes a little confused towards the end but his sons ended up suing my mother years later claiming he was mentally deficient and she must have coerced him. Understandably, he didn’t want conflict In his final year and left their expected share ‘vague’. It was devastating and even when my mother died they took more. Record him on video - I still have my grandfather telling me his life story - a great bonding experience for me that my son loves to watch as they never met. I am so sorry for your friend. Sending virtual hugs

[KnittingOnEmpty]

It's a devastating diagnosis. My fil was diagnosed (age 70) mid May. First signs were end of last year when his hand went, then gradually his arm. We thought it must be trapped nerves or something, never considered mnd. He then had a couple of nasty falls just before diagnosis. Now he is paralysed in arms and legs, has virtually lost speech and swallow is difficult. So cruel as his mind is sharp and he's previously been a very fit, active cyclist, outdoors type. It's very hard to predict as there's no 'one size fits all '. Mnd association is a very good source of advice, including financial /grants etc. Keep a log of all contacts with services as there will be many different specialists involved and it can get confusing.
I'm sure your friendship and support will be a great source of comfort to your friend.