I’ve thought long and hard before posting this.

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ClaretTony
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Re: I’ve thought long and hard before posting this.

Post by ClaretTony » Tue Jun 04, 2024 8:08 pm

Also roperclaret - Burnleymicksouth posted this the other day

viewtopic.php?style=2&f=2&t=76119

Pickles
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Re: I’ve thought long and hard before posting this.

Post by Pickles » Tue Jun 04, 2024 8:10 pm

Sending lots of love and spirit your way, roper. In your words - you got this.

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Re: I’ve thought long and hard before posting this.

Post by Burnleyareback2 » Tue Jun 04, 2024 8:15 pm

Good luck roper Claret- we are all wishing you the best on here.

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Re: I’ve thought long and hard before posting this.

Post by jdrobbo » Tue Jun 04, 2024 8:17 pm

Thanks for sharing, Roper: you truly are a very inspiring person. We’re here for you.
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roperclaret
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Re: I’ve thought long and hard before posting this.

Post by roperclaret » Tue Jun 04, 2024 8:19 pm

ClaretTony wrote:
Tue Jun 04, 2024 8:08 pm
Also roperclaret - Burnleymicksouth posted this the other day

viewtopic.php?style=2&f=2&t=76119
Thanks Tony, missed that but I have replied now

taio
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Re: I’ve thought long and hard before posting this.

Post by taio » Tue Jun 04, 2024 8:45 pm

Can't begin to imagine what you and your family are going through, roper, but your strength of mind and courage is incredible and will stand you in good stead.

Take care

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Re: I’ve thought long and hard before posting this.

Post by Wile E Coyote » Tue Jun 04, 2024 9:01 pm

Hoping you can battle through this, must be unimaginably tough to adjust to this being confirmed.
As other fellow Clarets have said, seek all available information and take the advice from the experts. Wishing you well and all the strength to fight this .

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Re: I’ve thought long and hard before posting this.

Post by FCBurnley » Tue Jun 04, 2024 9:02 pm

Sending you all possible best wishes and good luck. One thing that did stand out to me was that you first noticed it when you had Covid. Not in anyway saying that is the cause but there is an awful lot we don’t know the virus and what illnesses are associated with it. Lots of young men having problems you would not expect them to have. I am just hoping that your symptoms are a spin off from Covid and not MND. Stay safe

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Re: I’ve thought long and hard before posting this.

Post by JohnMac » Tue Jun 04, 2024 9:07 pm

All the very best wishes to you Roper.

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Re: I’ve thought long and hard before posting this.

Post by Quicknick » Tue Jun 04, 2024 9:24 pm

Best of luck, roperclaret.

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Re: I’ve thought long and hard before posting this.

Post by Jellybean » Tue Jun 04, 2024 9:26 pm

So sorry to read this, I was really hoping you would get different news after the test. Sending you lots of strength and courage, sounds like you are determined to enjoy life and I honestly think PMA can really help in these situations.
All the best, fight with all your heart, your claret family is with you.

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Re: I’ve thought long and hard before posting this.

Post by ClaretPete001 » Tue Jun 04, 2024 9:27 pm

Bets of luck Roper - wish you and yours well...!

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Re: I’ve thought long and hard before posting this.

Post by Boss Hogg » Tue Jun 04, 2024 9:28 pm

Good luck with this, stay positive and keep posting. There’s lots of help and support available on this board with non football related matters.

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Re: I’ve thought long and hard before posting this.

Post by beddie » Tue Jun 04, 2024 9:35 pm

Bloody hell Roper I was gutted when I read your updated post. Unfortunately I can’t offer you much apart from me and my families thoughts and prayers are with you and your family. Stay strong my friend.

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Re: I’ve thought long and hard before posting this.

Post by Big Vinny K » Tue Jun 04, 2024 9:43 pm

Very brave of you to share and hope the messages you have received offer some solace.
There will definitely be groups out there that offer you support and advice.
Wishing you and yours lots of strength and love.

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Re: I’ve thought long and hard before posting this.

Post by gandhisflipflop » Tue Jun 04, 2024 9:49 pm

I don’t know you roper but I wish you all the best. I hope the power of prayer brings you strength from all on here.

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Re: I’ve thought long and hard before posting this.

Post by quoonbeatz » Tue Jun 04, 2024 10:07 pm

Really sorry to hear your news, roper. Like everyone else, wishing you the very best. Keep positive.

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Re: I’ve thought long and hard before posting this.

Post by elwaclaret » Tue Jun 04, 2024 10:37 pm

Just on to add my best wishes to the rest Roper.

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Re: I’ve thought long and hard before posting this.

Post by berbs78 » Tue Jun 04, 2024 10:43 pm

You come across as a good man roper,kind and brave, even though I don't know you.My thoughts are with you and your family.

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Re: I’ve thought long and hard before posting this.

Post by beeholeclaret » Tue Jun 04, 2024 10:49 pm

Our thoughts are with you as you battle with your health issues. Hope that the symptoms remain manageable for as long as possible and that you can take on board the heartfelt good wishes of your fellow Clarets.

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Re: I’ve thought long and hard before posting this.

Post by mybloodisclaret » Tue Jun 04, 2024 11:02 pm

Sorry to hear all this Roper. Sending you very best wishes mate

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Re: I’ve thought long and hard before posting this.

Post by BurnleyFC » Tue Jun 04, 2024 11:23 pm

roperclaret wrote:
Tue Jun 04, 2024 7:53 pm
Hi all, pretty topical but diagnosis now confirmed. As of now I’m pretty much Ok other than my speech which I’m working on. I’m not downhearted and determined to keep normal life as long as I can. I’ll keep you updated if you don’t mind. I got this.
Heartbreaking news.

I’m sending you my best wishes and support, roperclaret.

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Re: I’ve thought long and hard before posting this.

Post by DCWat » Tue Jun 04, 2024 11:26 pm

I’m so sorry to read your news, Roper.

We might not all be there in person, but you have an army of clarets alongside you, both in spirit and on here, whenever needed.

My very best wishes to you, now and in the years ahead.

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Re: I’ve thought long and hard before posting this.

Post by Clive 1960 » Wed Jun 05, 2024 12:09 am

Hi Roper , thanks for sharing and being so positive we are all here for you . UTC.

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Re: I’ve thought long and hard before posting this.

Post by jedi_master » Wed Jun 05, 2024 9:11 am

So sorry to hear this Roper, all my best wishes/thoughts for you. Stay positive and I have everything crossed for you.

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Re: I’ve thought long and hard before posting this.

Post by Walkerpool » Wed Jun 05, 2024 9:29 am

You have a big family on this group so never feel sorry about talking. Wishing you all the best
Last edited by Walkerpool on Wed Jun 05, 2024 9:30 am, edited 1 time in total.

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Re: I’ve thought long and hard before posting this.

Post by Paul Waine » Wed Jun 05, 2024 9:30 am

Adding my thoughts and best wishes, Roper, to you and your family.

Take care.

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Re: I’ve thought long and hard before posting this.

Post by willsclarets » Wed Jun 05, 2024 9:56 am

I can't imagine what you're going through Roper, probably every emotion from hope to paralysing fear. Not knowing is horribly hard because you can't properly prepare for the unknown. It's a lot to try and process I'm sure and sharing it, even just here for now, is a good thing I think. I don't know you of course, but I hope with every fibre this is not MND and something else completely minor and treatable. If you'd prefer to talk to a complete stranger, I'm happy to do that if it helps at all. I have zero knowledge of medicine, but I'm a decent listener. All the best, I'm so sorry you're going through this
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Re: I’ve thought long and hard before posting this.

Post by willsclarets » Wed Jun 05, 2024 10:11 am

willsclarets wrote:
Wed Jun 05, 2024 9:56 am
I can't imagine what you're going through Roper, probably every emotion from hope to paralysing fear. Not knowing is horribly hard because you can't properly prepare for the unknown. It's a lot to try and process I'm sure and sharing it, even just here for now, is a good thing I think. I don't know you of course, but I hope with every fibre this is not MND and something else completely minor and treatable. If you'd prefer to talk to a complete stranger, I'm happy to do that if it helps at all. I have zero knowledge of medicine, but I'm a decent listener. All the best, I'm so sorry you're going through this
Oh God I only just saw the diagnosis confirmed. I'm moved to tears by your response to it, you have got this.

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Re: I’ve thought long and hard before posting this.

Post by ecc » Wed Jun 05, 2024 10:22 am

Very difficult to know what to say.

However, you are showing amazing mental strength, Roper. Truly amazing.

You've also shown great altruism.

This board is showing the great good it is capable of. Let us underline that and cherish it.

All best wishes with you and your family.

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Re: I’ve thought long and hard before posting this.

Post by bobinho » Wed Jun 05, 2024 10:54 am

All the best to you fella. Fight it, stay positive and the best of luck to you and your family.

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Re: I’ve thought long and hard before posting this.

Post by IanMcL » Wed Jun 05, 2024 11:41 am

There are no words for this.

I feel for you and your family. May its advance be slow and medical progress rapid.

Good luck and strength.
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Re: I’ve thought long and hard before posting this.

Post by aclaretinstevenage » Wed Jun 05, 2024 11:48 am

Like others I have witnessed this horrible disease within the family.

You seem to be showing the strength of character to fight the thing as much as possible. Heartfelt best wishes to you.

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Re: I’ve thought long and hard before posting this.

Post by Murger » Wed Jun 05, 2024 11:53 am

I can only echo what others have said. Best wishes to you and your family.

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Re: I’ve thought long and hard before posting this.

Post by Cirrus_Minor » Wed Jun 05, 2024 12:45 pm

Really sorry to read about your diagnosis. Puts a lot of the stuff that gets posted on here into perspective. Just like to wish you all the very best of luck.

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Re: I’ve thought long and hard before posting this.

Post by Herts Clarets » Wed Jun 05, 2024 12:59 pm

Such awful news to read, MND is such a horrible disease and very much in the news this week due to the sad passing of Rob Burrow. The character Paul Foreman in Coronation Street is in the latter stages of MND and the storyline was inspired (and I believe may have had input from) by Rob Burrow and his family to raise awareness and the profile of MND. Anything that can do this and hopefully raise funding to try to find treatment, or better still a cure is such a worthy and deserving cause.

My thoughts are with roperclaret and I can only echo what many have said on here, keep positive, keep posting and updating as long as you are able and I am sure if you are in need of anything, those who can offer help to a fellow Claret will be more than willing. My very best wishes to you.

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Re: I’ve thought long and hard before posting this.

Post by Pearcey » Wed Jun 05, 2024 1:14 pm

Really sorry to read this. Sending my best wishes to you and your family and glad to see you’re staying positive.

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Re: I’ve thought long and hard before posting this.

Post by Inchy » Wed Jun 05, 2024 5:30 pm

I’m sorry to hear this and I wish you all the best.

It’s a horrible disease. I’ve looked after patients with it, my wife who has working in neuro for over 15 years and is now a specialist Parkinson’s nurse has also looked after many MND patients.
I hope the recent high profile cases continue to highlight the disease and provide more funding for research. It is a relatively rare disease so doesn’t receive much funding but it’s devastating and there may be a cure out there waiting to be found.

Your attitude about keeping a normal life for as long as possible is vital in my experience. It’s easy (and understandable) to give up after a horrible diagnosis. But in my experience of these types of conditions mindset is everything.

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Re: I’ve thought long and hard before posting this.

Post by Blyclaret » Wed Jun 05, 2024 5:35 pm

Roper…. Mate sending you my best wishes and support.

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Re: I’ve thought long and hard before posting this.

Post by AlargeClaret » Wed Jun 05, 2024 6:33 pm

Glad to hear you’ve got all your ducks in a row Roper , and you’re most definitely going about it in a really positive way . Stay strong and the very best of health to you .

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Re: I’ve thought long and hard before posting this.

Post by Eloise Laws » Wed Jun 05, 2024 7:13 pm

I can only echo what other posters have said. May your positivity help you stay strong, and best wishes to you and yours in upcoming times.

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Re: I’ve thought long and hard before posting this.

Post by Aclaret » Wed Jun 05, 2024 7:13 pm

If I bumped into you in the Street Roperclaret I'd be none the wiser, yet my eyes are filling up reading about your dreadful situation and the great posts from fellow friends.
We all have usernames and that's just what they are, behind the names we all have our own lives to lead, every one of us is so different, yet we all come together on our message board when one of us is in adversity.....and so we should.
Not sure if words will help Roperclaret but it's just to let you know we are all behind you.
Keep posting mate. UTC.

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Re: I’ve thought long and hard before posting this.

Post by roperclaret » Thu Mar 20, 2025 7:03 pm

So, nearly A year since diagnosis so time for an update. Still fighting but it’s tough. Positives. Still working full time (from home),can still drive,can still walk (slowly) can still roll a ciggy. Negatives- Can’t speak eat or drink. Have lost over a third of my body weight and with it my strength. Spend all night and most of the day on my ventilator. Still managing to cook most nights for the wife and kids. Just trying to find a little Joy in each day
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ecc
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Re: I’ve thought long and hard before posting this.

Post by ecc » Thu Mar 20, 2025 7:34 pm

Difficult to know what to say without sounding trite.

I'd say you're doing unbelievably well to be as positive as you are.

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Re: I’ve thought long and hard before posting this.

Post by ClaretAndJew » Thu Mar 20, 2025 7:52 pm

roperclaret wrote:
Thu Mar 20, 2025 7:03 pm
So, nearly A year since diagnosis so time for an update. Still fighting but it’s tough. Positives. Still working full time (from home),can still drive,can still walk (slowly) can still roll a ciggy. Negatives- Can’t speak eat or drink. Have lost over a third of my body weight and with it my strength. Spend all night and most of the day on my ventilator. Still managing to cook most nights for the wife and kids. Just trying to find a little Joy in each day
Hi Roper,

I would hope and assume you've got good support from the Speech and Language Therapy team in order for you to more easily communicate, but if you have any questions or need some advice or sign posting, I am a qualified Speech Therapist. I work primarily with young people but I may still be able to offer some guidance or may know other's who work with MND. Just let me know if you need anything at all.

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Re: I’ve thought long and hard before posting this.

Post by FCBurnley » Thu Mar 20, 2025 7:58 pm

Whilst I don’t know you or your family/work circumstances and taking into account your openness on here. I would strongly recommend that you share your problems with anybody you feel able to
I am sure the response received from your fellow clarets will help but friends and family can help even more
Best wishes to you and I sincerely hope your situation improves in the coming months

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Re: I’ve thought long and hard before posting this.

Post by Darnhill Claret » Thu Mar 20, 2025 8:33 pm

ROPER, you are truly inspiring.

If I ever have the misfortune to have to face up to such a devastating diagnosis, I hope that I can face up to it as bravely and as positively as you continue to do.

I salute you.

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Re: I’ve thought long and hard before posting this.

Post by CoolClaret » Thu Mar 20, 2025 9:24 pm

Great to hear from you, Roper.

I echo Darnhill's sentiments - you are an inspiration.

All the best with everything.

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Re: I’ve thought long and hard before posting this.

Post by elwaclaret » Thu Mar 20, 2025 9:39 pm

You are a star Roper, I hope I’d find half your determination. Wish you nothing but the best

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Re: I’ve thought long and hard before posting this.

Post by ClaretTony » Thu Mar 20, 2025 9:54 pm

Roper, I’m not sure there is much I can say but your bravery and positivity really is inspirational.

My very best wishes to you.

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