MND / ALS support for best friend

[ladygin]

My best friend, like a brother to me, has MND. The fast declining type. What a cruel disease this is.

I am trying to help improve the quality of his life with practical support as well as emotional. And was wondering if anyone here had experience of things or where to go?

He is a stick your head in the sand type! But he can no longer use his hands to make phone calls and this is something I am trying to solve. He has an iPhone and Siri is somewhat variable in success. Any ideas?

He is in a full motorised wheelchair and can’t walk / stand / use his arms etc and now his hands are going but so far his voice is unaffected.

Love to all who have this disease and those that are supporting xxx

Oh God how horrible. I’m so sorry.

What help if any is he interested in? Im
a speech therapist so my mind instantly turns to getting voice banking done now while he still can, and getting an eye gaze system to increase his independence at home. Is he in touch with the MND Association?

thanks @PermanentTemporary he has banked his voice and has lots of NHS support but seems unwilling to engage with other agencies such as charities / forums etc. I think it makes it more real for him.

Hence I am trying to find out practical things on his behalf. I will ask him about the eye gaze system as that could be useful now rather than later.

How about an Alexa? Connect it to his phone to make calls and messages? He also can use it to ask for stuff/“google” and it will even tell you stories and has lots of games. It be useful while his voice is unaffected and it’s fairly cheap to buy.

I would say that it’s fine to get in touch with the MND association yourself. It might help you work out what help if any to offer. They’re a great charity.

Thanks both xxx

I am so sorry to hear this. I lost my oldest friend to MND last year and also really struggled with ways I could help. I am sharing my own thread as there were some brilliant suggestions on there made my people who had sadly, been down the same road.

It's a hard and brutal path - sending love.

https://www.mumsnet.com/talk/life_limiting_illness/4644403-sil-just-diagnosed-with-motor-neurone-disease

My heart goes out to anyone who has had the misfortune of coming across this disease in their life. My mum got it when I was thirteen, and was gone by my fourteenth birthday. If there had to be one disease I could eliminate from the world, I would likely choose MND/ALS. Or maybe terminal cancers. Sending my love and support.

Hi Ladygin, I am so sorry for your friend and you. It is a brutally cruel disease. And truly devastating to watch someone you love declining. Your support will mean rhe world to him.
My husband has MND. The best thing we did was get thr Eye gaze tablet,he can communicate his needs clearly with me,our boys . We can chat, albeit slowly.

I know and understand why he may not want to engage with the charities or agencies but the eye gaze has really helped ny husband.
He is very tech savvy, and is able to control the tv, lights and still have some independence to watch what he wants. He uses WhatsApp and is able to ring me if he needs me an I am in another room.
He will need a referral from his Neuro team or speech and language nurse.

I cannot tell you how invaluable it has been.
Take care of yourself too , MND is cruel to all involved xxx
Giddy x

@GiddyMintOtter thank you so much. Even just knowing the name of the kit helps me as I can research it and then tell him about it.

Im sorry you and your husband are experiencing this cruel disease xxxx

@ladygin we were referred to the ACE Centre, we are in rhe North West. They came out and did an assessment of need, which eye gaze tablet and eye gaze tracker my husband felt better using. We got the eye gaze tablet and a stand a few weeks later. They are coming out soon to look at a mount for his powered wheelchair so he can still communicate when we are not in the house.
Your friend will need a referral.from someone on his Neuro team whether its lead nurse or speech and language nurse.
My husband used elven for voice banking, he used old videos of himself. It sounds so much like him, I cried when I heard his voice.
Take Care Giddy x

I second this - a referral to your local NHS Assistive Technology team, via your SLT for a eye gaze computer my husband has a Grid Pad, like Giddy's DH above, on a stand. We also have the wheelchair arm, and a desk stand (was only useful when in hospital, but worth having).

https://thinksmartbox.com/grid-pad/

DH, despite very clearly needing the tech, still had to jump through hoops to qualify - eg had to prove he had exhausted other analogue methods and they were also assessing his cognitive ability to use the tech - again, v tech savvy, late 40s. But I think sometimes those much older with little experience of tech previously and /or cognition issues may need a slightly adapted solution - which they can personalise.

It is an absolute lifeline. ALEXA is no use for many with MND, as you need to be able to speak. The Assistive Tech team we deal with are utterly brilliant.

It enables him to use all the usual functions of a PC - watch tv, control Spotify, banking, excel, Word, play games, read books, news etc - and most vitally, communicate.

Same here regarding his banked voice for the first time, heart wrenching blast from the past.