Around November last year, my voice changed and some words started to sound slurry. I had COVID and attributed it to that. The last couple of months it got worse and my breathing was affected. Anyway last week I finally got an appointment with my GP who sent me straight to A&E. 24 hours later (after numerous specialists) I was sat down and told that the likelihood is I have Motor Neuron Disease (I’m 50).

Now, I’ve still got lots of tests to go through this coming week, but deep down I think they’re right. I’m not looking for sympathy here and getting on with things as normal, but I haven’t yet told anybody ( so if you think you know me please keep it on this forum for now). However I felt I needed to get it off my chest.

Also if anyone who has experience of this and can share (I know it’s not likely to be good), I would appreciate it.

Thanks

Don’t know much about the condition but just wanted to wish you well RC.

Roper, I am a speech and language therapist, not a doctor, so take what I say not a medical advice.

As you’ll be aware, MND is a diagnosis of omission, when all else is ruled out.

I hope there may still yet be something it could be instead of MND, but you sound prepared for the worst already.

I hope that you have the best care possible and that your symptoms advance slowly and you can still have a good quality of life for a while.

Make sure you have something in place to communicate your needs and to continue conversing with people should the time come you stop being able to use your voice. There are plenty of apps for iPads/android tablets as well as eye gaze if you stop being able to use your hands.

If you need any information on any of these I’d be happy to try and help. But hopefully you’ll have a good team of people around you should you be diagnosed.

My sympathy and best wishes.

But if the worst comes to pass, I’d suggest ensuring the area you live in can fund the best drug treatment. Get ahead of the game and find out the best options and local prescribing guidance. At times, these things can be a postcode lottery, we have to be proactive to avoid it.

Just wanted to say good luck.

I hope the further tests prove to rule out MND but if not then please ensure you get the best help and care possible. I’m so sorry to hear this potential news.

Best wishes Roper - I’m hoping that something else, less sinister, is identified as you undergo the testing.

It’s easy for me to say when I’m not in your shoes, but if you can talk to someone, do try to. Family, friends, loved ones will I’m sure want to support you, however they can.

That is such a sad post, I hope and pray that it isn't what you suspect but wish you all the best. As with a post earlier this week from a Claret coming out of a dark period this board isn't just for football so you post away just how you feel and help you need or just to vent.
Take care.

I’m so sorry, Roper. Regardless of whether it’s MND or not it’s clearly not good what you’re going through physically and mentally.

I have zero experience or advice that can help beyond the comments above, but wanted to acknowledge the post as many will read this without commenting. I wish you all the very best and hope the news is positive.

Sorry to hear that news Roper. I don't know you (I don't think!), but I wish you all the best and that the tests suggest something else.

I hope you can share the news with friends and family soon, no one should suffer alone. All the best, PLC.

Sorry to read this Roper and I really hope that the diagnosis is anything but MND. I watched a close family friend and known to many Claret following his diagnosis with MND a few years ago and it was heartbreaking. You have my very best wishes.

So sorry to hear this. Hoping and praying for the best for you x

Roper, thank you for feeling able to share. Sending very best wishes for the tests to come. Keep messaging people on here…there’s always someone around to talk. Take care.

Sorry to read this Roper and wish you all the best

Much love and positive thoughts to you Roper. Keep on keeping on, there’s plenty of life in the old dog yet.

Roper, first of all, I wish you well or as well as you can be for as long as possible. Secondly, sharing this on here will now make it easier to share with loved ones and others close to you. You know they need to know. If the roles were reversed I'm guessing that you would be hoping that they would share. Fight the good fight.

All I can say is how I echo the words of everone on here in say I wish you nothing but the best to you and your family RoperClaret ...

Bosscat wrote: ↑

Fri Apr 12, 2024 11:44 pm

All I can say is how I echo the words of everone on here in say I wish you nothing but the best to you and your family RoperClaret ...

Same here,all the best Roper and fingers crossed

Hi Roper,
I am so sorry to hear the bad news, as you know, i know who you are due to us meeting at the services when i was coming back from Great Yarmouth & the bad thoughts that i had about doing away with myself, If i can do ANYTHING at all to help you try & get through this then please, please, get in touch with me anytime, if you cant cope then i am more than happy to come & see you, your a friend & a fellow Claret,

i have a lot of spare time on my hands so please get in contact with me, dont sit there and think about things, you have done the hard part by letting everyone on here know the problem you are facing, you were there for me in person now i am returning that favour back to you, your a great guy Roper, you gave up your time to help a fellow Claret who was in severe distress at the time, so please let me help you in any way i can, travel is no problem to me, if you want to have a face to face then i will come to you, its no problem at all, i wish you all the very best, & am here if you need me, thats a promise.

From a Fellow Claret......to a very good Friend,

From Burnley Mick In the South.

Just read this before going to bed. A gut wrenching post.

I am so sorry you have the thought of this with you, whilst waiting in hope, for something less devastating.

You will have seen how Doddie Weir kept himself going and exercise was a big part of his longevity.

I do hope that you were right first time - just a lousy dose of covid.

If not, then I wish you everything good that can happen for you. Miracles where possible.

My very best thoughts are with you RoperClaret.

Wishing you all the best as you fight this battle with your health issues.

Good luck Roper. The very best wishes I am sending you for your results and your health. I hope everything is ok.

This board man, at times seems to be a occupied by some of the most annoying beings on Earth and at others is a bastion of great and selfless humanity. From the response to BurnleyMickSouth to this, you lot are incredible.

Feel lucky to be part of this community. Roper my thoughts are with you. If you feel comfortable doing so, let us know how you are getting on. Again, Good luck.

Hey Ropes, **** mate that isn't good bud, really sad to read that. It only feels like 5 mins since we were all kicking a ball about together as kids

I can't speak about MND although obviously appreciate it's seriousness and others have seemingly outlined some excellent practical things, I can only go from personal experience about other things to give advice but find the best doctors for a second opinion, even if they are outside of the UK, just because a doctor says something might be doesn't make it so and most importantly you don't give in regardless of the diagnosis. I cannot stress that part enough. They find new things and treatments and you have to hold on to that hope for as long as you have the strength to do so, you never give up, not even for 5 minutes. Serious illness can be a very dark place and no matter how strong and supportive the people are around you you will have to find the inner strength you probably don't realise you already have (you will have it, no doubt at all). Lastly, don't over think the 'what ifs' and 'how is someone going to cope' etc because more often than not those thoughts are very far from reality and adding extra concern is of no value to you or your family right now. It's a skill to live in the moment and it's something I hope you (and everyone for that matter) can do.

It's not always easy to vent to those close to you so if you need someone to talk to away from your family I'm always about. Can't add much more than that, sorry you are going through this mate.

Well. firstly I hope the diagnosis is wrong (unless it it transpires that it is something worse), but on the positive side Steven Hawking was diagnosed in 1962 with motor neurone and given 6 months to live. 64 years later he died of something else. I wish you well and please take care.

I do know you mate. And sending you nothing but positive wishes. Stay strong

Really sorry to hear that Roper but be strong and positive and we are all thinking of you..

Whilst we all feel for Roper, spare thoughts too for those around him. His immediate family in particular will have their lives greatly affected if this diagnosis is correct. The advice given earlier regarding another medical opinion is sound. I suffered a wrong diagnosis for more than a year until a second doctor declared it to be incorrect and put me on the right path.

Roper - good luck mate!!

Sorry to hear the news Roper, stay positive and I hope and pray everything will be OK with your illness.

Brave of you to post this, roper.
Wishing you all the best.

Wishing you all the best, roper. Good luck.

Hello Roper,
I would just like to send all my warmest wishes to you in these concerning times for you.

I don’t know you roper but you will be in my thoughts and prayers. It will be hard I know but please try and stay positive my friend.

My neighbour slurs her words really badly and it happened very quickly. She was told it was likely to be MND but it turns out it wasn’t after extensive testing.
I wish you the very best with your diagnosis and for the future.

I don't know you Roper but I truely wish you, your family and friends the best, if the diagnosis turns out to be correct. Keep enjoying the important things in life and manage the rest with the best care possible.

Sorry to hear your news. I hope sharing it here and reading all these warm replies from your Claret family is of some comfort.

I need to qualify the next thing I say with the fact I'm not much more informed than a bit of research using Google, and even then it's not being touted as a miracle cure or anything but... Full spectrum Cannabis oil (not CBD oil) has some incredible medicinal applications. What I just found on Google in relation to using it for MND was enough to suggest it could at least ease some symptoms and perhaps slow progres of the disease so it may be worth you investigating further.

Very best wishes to you for whatever happens. Human kindness from friends and strangers can bring strength and support, whatever life has to throw at us.

My very best wishes, roperclaret.

Let’s all hope that it is something else. If it does turn out to be MND then best wishes and hope you can continue to have a good quality life for many years to come.

Saddened to hear what you're going through Roper but I and every Claret is wishing you all the very best.
It sounds incredibly challenging and takes real strength and bravery to share this online, for which I commend you in doing so.

We're all here supporting you and want to let you know that you're not alone in this; please take care and continue to keep us updated on how you're doing as much as you feel comfortable in doing so.

All the best mate.

roperclaret wrote: ↑

Fri Apr 12, 2024 8:52 pm

Around November last year, my voice changed and some words started to sound slurry. I had COVID and attributed it to that. The last couple of months it got worse and my breathing was affected. Anyway last week I finally got an appointment with my GP who sent me straight to A&E. 24 hours later (after numerous specialists) I was sat down and told that the likelihood is I have Motor Neuron Disease (I’m 50).

Now, I’ve still got lots of tests to go through this coming week, but deep down I think they’re right. I’m not looking for sympathy here and getting on with things as normal, but I haven’t yet told anybody ( so if you think you know me please keep it on this forum for now). However I felt I needed to get it off my chest.

Also if anyone who has experience of this and can share (I know it’s not likely to be good), I would appreciate it.

Thanks

I know someone close to me who's Mum and Daughter both had the terrible disease and they have to rule other neurological disorders out , i wish you all the best and hope you are well looked after...

Nothing but best wishes and good thoughts from here, Roper.
Hope you have strong family around you to muck in, if diagnosis is confirmed.

The very best of luck to you roperclaret.

Sorry to read such a post. I truly hope the diagnosis is something other than MND for you. I don't know you but have seen MND within my family.

As others have said push as hard as you can for the best care available - whatever the diagnosis.

Wishing you all the best.

Puts a simple clanger in a simple football game into perspective.

Best of luck to you fellow claret

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.

I’m so sorry to hear that . I don’t know you but when I read your first post I immediately thought “Oh no, and that’s that top bloke who met up with MickSouth when he was at a low ebb”. You have an army of us on here who will do anything we can to help you. Very best wishes to you for happiness yet to come and that the disease is thwarted .

All the best roper - we're all rooting for you.

All the very best to you roperclaret. Good to see you are so positive and determined.

So sad to read that, Roper. Nothing but best wishes from Mrs Trevor and myself. Hoping you are surrounded by wonderful family and friends and make it a very long battle. Long enough for them to find a cure.

I'm so sorry to read your post. I hope things are in place to give you all the help you need.
Keep us updated.