To ask for your experience with MND?

[UnsureOfFuture]

Name change as outing.

My dad has Motor Neurone Disease. It's getting worse, fast.

And I'd like to hear other's experience of time frames with it please so my mum, my siblings and myself know what to expect. (If that's even possible.)

Started a few years back with slower walking and speech etc.

Now he's still able to get about but falls often. Chokes on food/drink daily. Struggles to talk often. He's very tired and seems in a constant brain fog.

Obviously it's very hard to my mum to be the only one home with him 24/7. We're dropping off shopping but can't go in or offer her a break.

Realistically can anyone help with what the future might look like? Understandably doctors won't give a proper time frame. "It'll get worse over the next 5 years" but honestly I can't see that. Seems very long based on how rapidly he's deteriorating.

Does he have a consultant or specialist nurse? I think he needs a review for the choking and the brain fog. He may be short of oxygen and be more comfortable with support.

My mother escaped the worst of it. The first winter after it had got to her lungs (5 years after first symptoms) she caught a bad cold from me. This turned into a chest infection and then onto pneumonia, which killed her.

She had a very good quality of life up until the last 5 days. Disabled in her limbs but still able to enjoy life. But once she got ill, it was very quick - her lungs just weren't strong enough to cough anything up.

Hi - so sorry to hear about your dad, Unsure, and will share my experience with you but hope it's not too upsetting for you. I lost my dad to MND 17 years ago and he died 13 months after diagnosis so it was pretty quick. He lost his speech and swallowing very early and was tube fed. From memory he was in a wheelchair for the last 4-5 months. My mum cared for him at home and although she was a retired nurse it was pretty tough going. He had a couple of respite stays at the local hospice and he was in there when he died, which I seem to remember we weren't expecting so soon.

My heart goes out to you and your family- it really is a cruel disease and can progress very quickly. I hope you can get support from somewhere - I know my mum valued the hospice enormously although wasn't that impressed with the MND Society - but that was just her experience so I would see if they have anything to offer.

Unfortunately I think you have to prepare yourself for the worst - from memory I think I was grieving from when my parents told me the diagnosis as I was working in an allied health profession and had some idea about the condition. When I lost my dad it was horrible but it was no life for him so in that respect I was grateful that his death was peaceful and that we were with him.

Sorry if I've said anything to upset you, you have all my support and it must be even harder with the current situation. Take care and if you have any other questions I'm happy to try and help.

I’m very sorry to hear about your dad. My wonderful mother was given a time frame of 2-5 years. She was dead 8 months after diagnosis. She was still walking but her swallowing was severely affected and speech was becoming hard. She contracted pneumonia and her lungs were not strong enough. I am actually thankful that her battle against this dreadful disease was short.
Take care

My relative died about a year from diagnosis. I'm sorry it's not a happier outcome

My dad never got tested for mnd but it was a real possibility for him.
He was fine walking for his age, no problems talking but there was something clearly off and his breathing was laboured.
We went to see a mnd specialist who didn't diagnose him but also didn't rule it out.
My dad died the next month from a heart attack which turned into lack of oxygen to the brain so he became brain dead.
My dad was a free spirit, loved travelling and doing things so to us it was a blessing that he didn't progress anymore. He would have hated the lack of dignity and privacy this disease would have given him.
Not sure how helpful my experience is but I know it was a huge shock and I was more upset by the prospect of mnd than I was when dad died.
I do like the film the theory of everything which is about Stephen Hawking's life. It means more to me now than it did when I first watched it before dad's decline.

I lost my mum to MND last year, 8 months after diagnosis, and around 15 months from onset of symptoms. She had always been fit and healthy, and the change in less than 2 years was awful to watch. Hers started with speech, swallowing and breathing. In the end she could barely breathe without assistance. It's a truly horrendous disease. I'm so, so sorry your dad has had this diagnosis.

Thank you all for your kind replies.

It means a lot that you've taken the time to share your stories. I'm so sorry you've had to deal with this in your families too.

It's so horrendously cruel. And the bleakness makes it worse.

Literally the only thing keeping him going currently is looking at euthanasia options for when lockdown ends. Honestly can't say I blame him, nor would I stop him if it were up to me. I think I'd be the same if it were me Not sure of the legalities and things.

It's so shit.

It was 18 months from diagnosis to death with my family member. Symptoms were apparent for 7 months prior to diagnosis.

Hi OP.
MND is one of, if not the most, evil diseases out there.
I used to work at the MND Association. Have you been in touch with them?
They really do do some amazing work and can send you out loads of information packs and even organise for a volunteer carer if you need it. They also have a free helpline to call to talk through any worries, practical or emotional, you have. There should be branches in your area where they do meet ups of support as well.

www.mndassociation.org/

Are you in touch with the MNDA, OP? Lots of help and advice offered. It use to be the case that people would have an association visitor allocated to them to provide support and information.
Also, there should be specialist multi disciplinary NHS teams providing therapy. I am not sure how they are operating in the current circumstances but they certainly offered SALT for speech and swallowing, physio for mobility and breathing difficulties , and OT for equipment and adaptations to support carers with everyday needs. Your father’s GP should have information, or in my area, info was online with the opportunity to refer yourself. MND should be prioritised because of it’s rapid progression.
I’m so sorry OP. This is such a cruel disease.

18 months from diagnosis to death

I'm so sorry
MND is horrible. In my experience the people who lose the swallow as the first symptom fair the worst. Otherwise it varies. Some have rapid changes and some slower but it does keep progressing, sadly

On a practical level look at what changes can be made to the environment. Has an OT looked at the house? Changes can be rapid so if you can get ahead of environmental changes it can help
Do a search and see if you have remap in your area. They are usually retired engineers who make bespoke pieces of equipment when off the shelf stuff doesn't work. I've seen some good walking aids they have made for MN patients. An OT would refer and work alongside them

@UnsureOfFuture and everyone else who has shared on this thread.

I'm so sorry to hear this news. My Morher passed away from the condition in 2000. At that time it was an average of 18 months from diagnosis to death, which for her, was very accurate.

She became increasingly frail and started to look very old quickly. However if you haven't already do gain help from local services.

She was assigned a speech therapist who gave her a voice computer (so she had a voice like Stephen Hawking) and later when she couldn't operate that, a sheet with picture on it to point to (eg 'need a drink', 'have pain' etc). The latter was such a simple idea which made things easier.

She had a stairlift fitted which think the MND associated paid for. She also had a bath seat - which was supplied by social services. The MND Assoc were very good at advising.

In time she had to have an operation to be fed through a tube. Rather invasive surgery at that time in her life to be honest.

It's an extremely cruel disease and I'm so sorry that it still has no cure.

My BIL has MND, diagnosed 4 years ago. Seems to have progressed slowly with him thankfully, he can still walk, talk feed himself etc. This maybe because he is young, only 40 when diagnosed and before was very fit and healthy. My SIL and family have had some fantastic support from their local hospice- do you have one near you?

It's a cruel condition and like so many, timescales vary - for my friend it was a little over 4 years but he was younger at diagnosis than many (even sadder perhaps). Having important conversations about supportive options eg feeding, oxygen, dnr etc is important whilst they still have language. Whilst euthanasia is illegal in Britain, it's legal to refuse supportive treatments and just ask to be kept comfortable if they have capacity hence the need to discuss ASAP.

thinking of you, so hard

My sister in law died last year. It was about four years after the first symptoms but they spent a long time and money exploring and hoping it was something else.

Her legs were affected first, then arms and swallow relatively later on. She was peg fed for the last six months or so.

Her family spent time building lots of memories, including a trip of a lifetime, which was hard because of the need for additional equipment on their travels but it was really important for the kids.

They also sold up and moved to a house which she could get around in a powered wheelchair relatively easily and although they were only there for a year it made a huge difference to all of their quality of life. They've sold up again now and moved away from that house with very emotional memories.

It's a horrible condition, I hope you get to spend some quality time together

Im so sorry to hear this.

Again sorry if this upsets you further. My dad had MND for 18 months from diagnosis. He was actually diagnosed really quickly as his GP had already had a case. Its common that GPs only ever see one case in their career. He needed help walking at the end but the end was relatively swift (mercifully) he was actually in for a weeks respite care but could still just talk and eat and walk and just slipped into a coma.... he died 2 days later.

I think someone told me that (and please don't take this as gospel) that once they need aids to walk and assist with living, then its approximately 1/2 way through. This was certainly true with my father as he used a walking frame from just under a year.

Our local MNDA were very supportive. They even sent us an electric wheelchair.

My BIL lost his father to this cruel disease, it was diagnosed in January with “up to 2 years” life expectancy but he passed in June. My heart goes out to you - it’s a horrible way to watch someone you care about deteriorating ❤️