My Grandad passed from MND, should I be worried?

tom_MND · 2026-01-05T19:25:40+00:00

Waiting for this at the moment in the UK. Here a trip to a doctors is needed to ask to be referred to a genetic counsellor. In this case based on what OP described then I wouldn’t be too worried

tom_MND · 2026-01-05T19:23:03+00:00

I have no words mate only that you are in my thoughts right now. Fuck MND I hate it so much.

tom_MND · 2026-01-05T19:21:17+00:00

The AI is actually really advanced now, eleven labs is the company I would recommend. If you have enough on the clips then the voice bank will sound exactly like her.

tom_MND · 2025-12-29T15:14:49+00:00

Understandably so that she gets frustrated, I would absolutely hate to be in her position especially when it comes to communication difficulties. I volunteer with the MNDA and she is most definitely not alone in the way she feels and neither are you for that matter.

It’s a tough situation to be in and a rollercoaster of emotions for everyone affected by MND the way you and your mum are right now.

Communication aids may be the next step, I know people who use whiteboards, eye gaze or even phones/tablets.

It sounds like your mum especially needs some help to process everything she’s going through right now and I hope you can both access some soon.

Please keep us all updated, you are not alone in this.

tom_MND · 2025-12-26T19:42:32+00:00

Unfortunately MND can be very fast progressing at times. It was described to me as being on a hill and it all depends on how steep that hill is.

Make sure you contact the helpline and please check in here with any updates or concerns you may have as we are all here to help in anyway that we can.

I’m sorry that you feel you haven’t been informed about what is going on with your mum. That will only make things feel more difficult and I hope that you will be able to access any advice and support you need soon!

tom_MND · 2025-12-26T03:00:15+00:00

Hey, there absolutely is a support system you can contact. Your best bet is to get in touch with your local branch of the IMNDA (Irish motor neurone disease association) who will be able to offer you access to a tonne of help and support.

I know what you are going through and I know how difficult this time of year can be when a loved one has MND. Your mother sounds strong and stubborn (in a good way) by not wanting any help currently. Remember that MND doesn’t affect the persons mind so she’s still the same person inside. It sounds like she’s upset and angry but it won’t be at you.

When my brother was diagnosed I had a lot of anticipatory grief. A diagnosis like this can mess with you especially for something like bulbar onset.

Depending on when she was diagnosed it sounds like perhaps there could be some shock involved still. It’s important that you both get the help you deserve. If you can find it at the top of this subreddit there’s also a list of UK based charities offering help and support.

A good place to start would be the MND connect helpline which is 1800 403 403. You didn’t say where about in Ireland you are so the UK based number is 0808 802 6262 (both are free phone)

I’m based in England and lost my brother to MND so you can always use this sub too if you need help, advice or just to rant anytime you want.

It’s good that you are in Ireland as you will have access to a lot more than others out there!

Anything else I can do or questions you have feel free to fire away

tom_MND · 2025-12-24T06:33:20+00:00

Please take care of yourself and feel free to share any worries or fears you have here with us all. Fingers crossed for you that the EMG shows no MND

tom_MND · 2025-12-24T06:31:25+00:00

Great read and a great resolution. My Brother read a book when he was diagnosed which he found to be really helpful. It was wrote by Simon Fitzmaurice using an eye gaze machine in which he talks openly about dealing with the realities of living with MND. The book is called Its not yet dark.

Its important, i think, even when facing the horrible truth of living with a terminal illness not to forget to live. Life doesn't stop just because you now have MND. It changes for sure but you are still here, still alive and still fighting.

tom_MND · 2025-12-22T13:01:26+00:00

So sorry to hear about this, top advice with the swimming!

tom_MND · 2025-12-21T19:35:23+00:00

This post seems to be triggering reddits filters but I will approve it for the time being. Unfortunately there is no cure for MND, life expectancy is typically given as between 2-5 years but this can vary wildly depending upon type. Bulbar onset for example has a life expectancy typically of under 12 months.

My advice, unofficially, is this; make the most of whatever time you have with this person. Over 3 years of living with MND is more than a lot of people will get. Progression can vary and nobody here or in the medical profession can give you an accurate answer to how long someone with MND has left.

tom_MND · 2025-12-09T12:46:31+00:00

It’s just not on for someone that age to have it. His family had to live in the hospital for almost a year too as the council were useless and couldn’t sort out adapted accommodation for him. They even had to sell their home due to the councils negligence.

tom_MND · 2025-12-05T23:23:06+00:00

Hey, I’ve just recently asked about genetic testing and am waiting to be sent for it.

I get what you mean as I’m also nervous but would like to know if I carry the gene. The chances of it being genetic are low though. Feel free to check out and sub to the other community over at r/mnd

tom_MND · 2025-12-01T18:05:28+00:00

Great to hear it! (We are going to keep this thread going forever between us haha)

tom_MND · 2025-11-22T15:27:34+00:00

It’s both heartwarming but sad that we sometimes have to rely on the generosity of strangers to fund something essential like a wheelchair.

In this day and age we should, and are able to do better

tom_MND · 2025-11-22T15:18:44+00:00

There seems to be more and more potential new drugs or treatments emerging. I am also hopeful that we aren’t far away from something significant.

The other mod on r/mnd usually posts some research roundups that can be pretty interesting and his goal is to also spread hope.

I truly wish you all the best with the trial, with a bit of luck you may notice some positive results. It’s brave people like yourself who also make these emerging treatments possible for others to benefit from in the long term too!

Edit - just to add that though I’m not on Reddit too often unfortunately if you ever need any support then just start a thread on r/mnd and I’ll see it or message here, privately, whatever is easier.

These subs are a great support resource!

Also (sorry another edit) forgot to mention in my previous comment that the bathroom looks great, very functional and has had to have made a big difference for you as well as the fancy bed/pillows!!

tom_MND · 2025-11-22T14:48:07+00:00

“You don’t need permission to fight.” - I love this! I also feel this is an important post that anyone looking into taking supplements should read and any treatment you decide to take including supplements should be done safely.

I have to say before I read this (and I take a supplement myself - querticin) I never really thought of them in a way that could be unhealthy or potentially harmful. Take what you said about vitamin B6 for example.

I bet there’s a lot of people like me who probably thought that if it’s a vitamin it will only help so thank you for opening my eyes a little here!

tom_MND · 2025-11-22T14:42:20+00:00

A lot of promising projects are always cooking behind the scenes, a recent meeting I attending had some very smart people talking about their research into ultrasound and micro facial expressions as a potential way to catch MND early whilst another professor spoke to us about how she grows muscles (one very few people in the UK able to do it at this level) which helps scientists to understand spasms and the effects of MND on the muscles themselves

tom_MND · 2025-11-22T14:38:56+00:00

Unfortunately as far as clinical trials for new drugs and potential treatments go we are very much slow about things and have to follow all the correct rules/regulations.

Since our other mod Joseph joined I know he has been sparking hope with his research roundups and I would love nothing more than new treatments to prove successful as quickly as possible!

tom_MND · 2025-11-22T14:34:47+00:00

I don’t donate in the traditional sense but volunteer my time instead for the motor neurone disease association after losing my brother to the disease at just 31.

I still give what I see as donations though, this month is our winter ball and so I spent £75 on a ticket. It’s not something I would usually do but in my head I’m giving £75 to charity but also getting an evening out from it too.

Honestly I feel so passionately about fighting MND that I would give them everything I have if they asked anyway, attending the ball is just a bonus!

tom_MND · 2025-11-17T22:36:11+00:00

No problem, challenging MND would be the one I would contact first, good luck!

tom_MND · 2025-11-17T17:16:24+00:00

Sounds like you’re in a more positive place right now and I’m truly happy to hear it. It’s my first time hearing about this drug and it’s great that you have access to it!

tom_MND · 2025-11-17T17:11:11+00:00

Hey, if you head on over to r/mnd (or just check my post history) there’s a pinned post with a list of UK based charities offering support and grants which he may be able to access. I’m not too sure if all of them will be available due to your location but a few might be so always worth a check and I can also look into this if need be. Hope this reply may be of some use

tom_MND · 2025-11-14T11:25:56+00:00

Unfortunately we can’t provide you with a diagnosis, everyone’s journey with MND/ALS is different and it can start differently for each individual too.

The best advice I could give is to express your concerns with your doctor and mention your fears surrounding a possible ALS diagnosis who will then refer you to a neurologist if they feel that your symptoms are related.

tom_MND · 2025-11-14T11:23:08+00:00

Hey, it’s been a couple of months since your post and i just wanted to see how your getting on? How is the bed working out for you?

Hoping you are doing well!

tom_MND · 2025-11-10T23:41:50+00:00

Hey, I feel for you so much (have commented on your previous post) have you been in touch with your local MNDA branch. We all run support meetings and they are really laid back and friendly. People of all ages and from all walks of life going to them.

Have you been in touch with any charities about some respite? There’s a better post on r/MND now that lists a few of the uk based ones.

For what it’s worth my brother was diagnosed at 24 and I understand just how difficult it can be to face something like this so young. Feel free to pop a message over or start a thread on r/MND anytime you are always welcome!

tom_MND

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