Motor Neurone Disease

[FactualFrank]

I posted back in I think 2018, of how my aunt had been diagnosed with Motor Neurone Disease. She is now struggling to breathe and I've been asked to text her what is probably my final words to her.

She is the last of the four - my mum and dad have died and my uncle died of a brain tumour going back almost 20 years ago. She is the last one and I still remember when we'd travel down from Burnley to Essex to see them and see my cousins.

Just thought I'd reach out to the people on here as I think Alan Beecroft had the same thing (might be my mistake there) and Lenny Johnrose. A horrible illness, and, well... yeah. Not sure what else to say. I hope we're allowed to attend the funeral but still awaiting the rules on that.

[GodIsADeeJay81]

Sorry to hear that fella.

My Dad died back in January, just my Auntie/my legal guardian left from his side of the family and she's now 80.

Never experienced someone I know having Motor neurones, but from what I've seen I wouldn't wish it on anyone.

[Fretters]

Sorry to hear that mate. Lost my aunt a few weeks ago at 56 to leukaemia. We were allowed 22 inside Pleasington crem for the funeral. We didn't have a wake but we'd have been allowed 15 I think. Not sure if that changes with the lockdown.

[jdrobbo]

Thinking of you FF. A very cruel disease. I can’t imagine how difficult this must be for you. Take care fella.

[Bosscat]

Thoughts are with you Frank ....

[ClaretTony]

You are right about Alan Beecroft and it was so hard watching him deteriorate as he did and he did it without losing his hardly politically correct sense of humour.

A very good friend of mine died last week. Her funeral is a week on Thursday but it’s close relatives only.

My thoughts are with you and it is so much more difficult now because of the circumstances.

[FactualFrank]

You are right about Alan Beecroft and it was so hard watching him deteriorate as he did and he did it without losing his hardly politically correct sense of humour.

A very good friend of mine died last week. Her funeral is a week on Thursday but it’s close relatives only.

My thoughts are with you and it is so much more difficult now because of the circumstances.

From what I understand, it doesn't effect the brain, so they think the same as they always have done. So it doesn't surprise me that it didn't impact his humour.

The last time I was down in Derbyshire to visit her, I was discussing Derby County with my cousin. We couldn't remember who the manager was until my aunt said, "Cocu" - reminding me that she is the same as she always has been.

[Heathclaret]

Terrible disease Frank, I knew of someone in France who was diagnosed with it, it started with a tremble in her hand. Once she was diagnosed they moved back to the UK.
I think she was only in her mid forties.


Thoughts are with you.

[ten bellies]

You are right about Alan Beecroft and it was so hard watching him deteriorate as he did and he did it without losing his hardly politically correct sense of humour.

A very good friend of mine died last week. Her funeral is a week on Thursday but it’s close relatives only.

My thoughts are with you and it is so much more difficult now because of the circumstances.

We all mostly edit our thoughts before speaking. Alan delightfully never did. Whenever we met outside the Turf he used to ask my daughter if she was married yet and why not, from her being 6 or 7 right through to just before he passed away when she was 17. Her awkwardness to this line of questioning never changed over the years, and neither did Alan's revelling in her response. It's the people who make Burnley, and the less bland the better. As for MND, it's a cruel disease.

[conyoviejo]

Sorry to hear this sad news Frank.The rugby league player Rob Burrows has this terrible illness as well at his young age.

[Herts Clarets]

I watched a programme about Rob Burrows recently and seems to be going downhill rapidly. I know there are different strains of MND, some more aggressive than others. Alan Beecroft sadly had an extremely aggressive strain. Not long before he died, he had seen a doctor who told him they would insert a tube to feed him if he was unable to eat. No you f****ng won't was Alan's response.

A truly horrible disease that I hope research can find a cure for.

[huw.Y.WattfromWare]

Only good thoughts for you and family at this dreadful time, Frank.

[dougcollins]

I assume there are variations of the illness - a good friend of mine (ex SBS) died within a year of diagnosis. He was the fittest person I've ever known.

[FactualFrank]

Thank you for your replies, it means a lot. I sent the text to her, so hope she reads it. In times like this it reminds you that this board has a lot of very decent people and I'm referring to the posters above. Fair play.

[aclaretinstevenage]

Frank, I lost my brother in law to MND in April 2019, I visited him and my sister weekly as much to support my sister as anything but to watch a fit strong hard working man in his very early seventies deteriorate over just two years was truly awful.

Pete's condition started with his legs and worked upward eventually denying him the ability to breathe until in the end his dying was a merciful release from the horror.

Still no cure for this rotten disease and with Covid taking up most of the scientific research time it's unlikely there will be a cure anytime soon.

Can only offer my sympathy to you having seen it at close quarters. Very sad.

[FactualFrank]

This is more difficult that I expected. I text her how I felt and what she meant to me and had a reply. She said, "What a very lovely message, everything you said is true". She then went on to say a few more things, but I'm glad I got to tell her that.

Ahh... it's crap, but thanks for the very thoughtful messages.

[ClaretTony]

I assume there are variations of the illness - a good friend of mine (ex SBS) died within a year of diagnosis. He was the fittest person I've ever known.

Very much different variations. I can’t remember the name of the one Alan had but it was very aggressive. He was 21 months from diagnosis to passing away but we’d seen deterioration long before he was diagnosed.

[FactualFrank]

Very much different variations. I can’t remember the name of the one Alan had but it was very aggressive. He was 21 months from diagnosis to passing away but we’d seen deterioration long before he was diagnosed.

Hi Tony. Not convinced there is much difference. It is what it is.

[ClaretTony]

Hi Tony. Not convinced there is much difference. It is what it is.

They all ultimately lead to the same thing but some are far more aggressive than others. To see someone close to you, friend or family, suffer with it is very difficult to deal with.

[FactualFrank]

They all ultimately lead to the same thing but some are far more aggressive than others. To see someone close to you, friend or family, suffer with it is very difficult to deal with.

It is. It's tough. You remember some of the things. I was with her when we saw you away at Reading. Just totally random things.

[tiger76]

My condolences FF, it's a horrible disease to experience first hand at the best of times let alone during a pandemic.

I'm sure the thoughts of everyone on the board is with you at this tough time, you're one of the most thoughtful posters on this board, and it's circumstances such as this that make you realise what is important in life, try and stay strong, and hopefully you'll be able to attend the wake if and when it happens, seems weird to wish for such a thing, but I hope you understand my sentiments.

[Siddo]

A close friend of mine died from this a few years ago. I did a bike ride last year to raise funds for the East Lancs branch of the charity set up to fight MND.

We cycled the 127 miles of the Leeds and Liverpool canal over 2 days and raised around £3.5k. This money was vital for a little known cause whose supporters work tirelessly.

I have been thinking about doing this again next year and probably will after Frank's post.

[FactualFrank]

A close friend of mine died from this a few years ago. I did a bike ride last year to raise funds for the East Lancs branch of the charity set up to fight MND.

We cycled the 127 miles of the Leeds and Liverpool canal over 2 days and raised around £3.5k. This money was vital for a little known cause whose supporters work tirelessly.

I have been thinking about doing this again next year and probably will after Frank's post.

This is one thing I've always wanted to do, although I wanted to see the sights and appreciate the scenery, so wanted to walk it instead.

Just for an update, my aunt has gone into the palliative care hospice, so looks like I'll never see her again. With lockdown starting tonight, visitors are pretty much not allowed.

[Siddo]

This is one thing I've always wanted to do, although I wanted to see the sights and appreciate the scenery, so wanted to walk it instead.

Just for an update, my aunt has gone into the palliative care hospice, so looks like I'll never see her again. With lockdown starting tonight, visitors are pretty much not allowed.

Walking in stretches is a great way of seeing the sights and getting a few miles under your belt.
The stretches between Wigan and Botany Bay are nice, as is Salterforth to Gargrave and Bingley to Leeds.
If you wanted to join us for a few miles next year just let me know. We had lads last year who did just one day with one lad just doing around 20 miles on the first day.
Really sorry to hear about your Aunt. It is an absolutely terrible disease.

[SalouClaret]

Really sorry to hear this, Frank. My thoughts are with you.

[chorleyhere]

Thoughts and prayers for you Frank and with all those who are unable to visit loved ones in care homes. To have a close relative, who has always been part of your life history, become less of their true selves is heartbreaking and especially when it is accompanied by a feeling of helplessness.

I know of a little girl aged 6 who couldn't visit her grandad. A girl has cycled more than 130 miles to support her granddad's battle with Parkinsons.
David Molyneux, 72, was first diagnosed with Parkinson's Disease in 2010, his six-year-old granddaughter Lucy was one of the only people he recognised whenever she visited him at the Paradise House care home in Leyland.
Lucy, from Eccleston, decided that she wanted to help her grandad and, after watching her mum, Jayne Clark, 39, swim for charity, she decided to cycle in support of Parkinson's UK and the Paradise House resident's fund.

The six-year-old told LancsLive that she has already raised more than £1,400 through her exploits and won't stop cycling every day until the end of June .
"I wanted to help my grandad and all the people with Parkinson's," said Lucy. Sadly because of lockdown Lucy didn't get to see her grandad again before he died.

We may find solace in doing something that helps others in the same circumstance or in raising money for scientific research - at least that is a positive when life feels very negative.

[Paul Waine]

Adding my thoughts for you and your aunt, Frank. Sometimes all you can wish is that they are released from suffering and are quickly at peace.

Take care and remember the good times.

[FactualFrank]

Just a update. My aunt was transferred to the hospice earlier today, where her breathing mask was removed and she was sedated. and made comfortable. She passed away about an hour ago.

[tiger76]

Just a update. My aunt was transferred to the hospice earlier today, where her breathing mask was removed and she was sedated. and made comfortable. She passed away about an hour ago.

Sorry to hear that FF, at least she's at peace now, my condolences to you and your family, hope you manage to arrange a decent funeral within the permitted guidelines. And hopefully this forum will provide some comfort and entertainment during your trying times.

[ClaretTony]

Just a update. My aunt was transferred to the hospice earlier today, where her breathing mask was removed and she was sedated. and made comfortable. She passed away about an hour ago.

So sorry to hear the news but she will at least now be at peace. I've seen at close hand the effects of this dreadful disease.

[Aclaret]

You're right Frank such a horrible illness, I know someone with it. My thoughts are with you Frank, may your Aunt Rest in Peace.

[HB Claret]

So sorry to hear your news - my aunty Sheila died from MND shortly after the play off game against Sheffield United. Sheila was a lifelong Claret and season ticket holder and attended games until she was hospitalised with the disease. She hated the lot down the road with a passion that was only matched by her love for the Clarets. It truly is a dreadful way for someone to die - thankfully she was fully aware that we had made it back to the top tier but sadly after suffering all those years in the lower divisions she didn't get to see us in the premier league. It has truly been an awful year - my brother was walking through a local park and suffered a heart attack and died just before the lockdown and then in April my father, who had been suffering with dementia for a number of years contracted Covid and died. Dreadful times but at least this topic has given me another chance to reminisce about my aun ty who supported Burnley through thick and thin.

[Goodclaret]

So sorry to hear that news FF. I know it's always horrendous losing any one you are close to but it is much, much crueller during these Covid times. I'm glad you got, at least, a chance to tell her what she meant to you but it's nothing compared to being able to see them during their final days/weeks/months. I hope you do have some peace knowing she is no longer suffering.

I lost my Dad in August and, if I hadn't managed to get him back to his own home for 24/7 care, I wouldn't have seen him in his final 6 weeks of his life as he was in hospital then a care home prior. I feel unbelievably lucky to have been able to be with him for his last 8 days and I will be forever grateful to the carers, nurses and doctors who made him as calm as comfortable as possible.