The Lemon Fool

I have just been diagnosed with Motor Neurone Disease.
Found out yesterday after several months of tests including 3 MRIs, two lots of camera one down my throat (I was knocked out for that) the other up my nose, boy does that make your eyes water
My current symptoms are slurred speech, a right arm that I cannot raise above chest level, difficulty eating drinking ang swallowing. Also, my neck tilts to one side when I walk.

On the plus side I have a wonderful brother and sister in-law, several very good friends and great neighbours
and I do feel fine in myself
I guess these are the early stages, and there will be good days and bad days
I am getting on with my will and power of attorney forms
and will still be part of the TLF for some time to come.

Thanks for reading

Damn. What rotten luck.
Always seems it’s the good guys that pull the short straw.
Best wishes.

I'm sorry about your situation and would struggle with that news.

I remember helping a chap with a visit to see Princess Fergie who was at that time involved with a MND charity. It was nice to see her take time out of her schedule just to see this chap. In fact she pushed for the private meeting and my opinion of her was enhanced greatly on observing how she dealt with the situation and him as a person. Much nicer than the press made out and he seemed happy with the meeting.

I don't have much advice to offer but hope you and your family can make the best of a bad lot.

pje16 wrote:I have just been diagnosed with Motor Neurone Disease.

Bummer.
One always imagines that this sort of thing only happens to other people.

So there was life before yesterday, and there will be life after, but different. I suppose one could cite Hawking as an example of how life can go on, although I'm sure he would have preferred it otherwise.

I wish you peace of spirit as you go forward.

V8

I'm very sorry to read this, pje. It puts my own niggles with this world into some perspective.

Wish I had something practical to say... maybe keep an eye out for drugs trials?

Anyway, keep posting.

What terrible news pje - I'm so sorry. I hope we shall be reading your contributions here for a good many years and if it turns out to be "decades" I shall not be here to read them.

I shall have a my regular friday drink and raise a toast to a very slow progression for you.


Arb.

Many thanks to all of you who took time to write a few words
they did help on what was a bad day for me
and I was also pleased to see so many “thanks”
I'm sure now that I have done the 2 PoAs (hopefully not needed for quite some time )
I can put those negative thoughts out of my mind and carry on
thank you once again
cheers
Paul

pje16 wrote:Many thanks to all of you who took time to write a few words
they did help on what was a bad day for me
and I was also pleased to see so many “thanks”
I'm sure now that I have done the 2 PoAs (hopefully not needed for quite some time )
I can put those negative thoughts out of my mind and carry on
thank you once again
cheers
Paul

Wow! I have just seen this thread. How appalling. I am so very sorry to hear that and suspect that you may be rather younger than me. I know only too well that it takes but one call to turn your life upside down. I have no doubt that you will carry on for a long while yet and that you have the moral support of all of us here who will be thinking of you. I too will raise a glass to you this evening.

Dod

We had a friend with MND who found the MND Association extremley helpful with advice, support and practical help, from coffee mornings to help with tech to just an ear ready and willing to listen. So just in case you haven't already been directed to them..... http://www.mndassociation.org/

Hi Paul,

I am overwhelmingly distraught and deeply saddened to hear about your diagnosis. It really is devastatingly tragic news. I cannot begin to imagine just how you will be feeling and coping with it. I have no idea what I can say that will provide any form of comfort or reassurance. I’ve had to compose myself before trying to say something, anything, that could possibly be helpful.

I recall when you first joined Lemon Fool and how you’ve become part of the fabric over the last [nearly] two years. I think you were a Fool before you became Foolish and have certainly been a very positive and constructive Fool.

I’m sure you’re getting all the support you need, medically, physically, and emotionally. But would you mind, as it will help me to feel as if I’m doing my bit, if I closed my post with a suggestion please. As you’re aware I’ve spent a lifetime dealing with serious health issues of my own and I’ve become addicted to positive thinking … that often gets me into bother with others.

You may be aware of this website. MND-SMART. If you’re not, please may I suggest you pop over and have a quick look.

If I recall correctly geography limits my ability to extend an offer of help outside TLF. But if you feel the need to talk don’t hesitate to post on Comfort Cafe. I know I speak for the entire Fool community when I say you will never be judged in here.

I am genuinely gutted to hear about your diagnosis.

For what its worth may I close with a small suggestion please

Take care mate

Darrell

AsleepInYorkshire wrote:

Hi Darrell
thank you so much for your wonderful reply
I didn't know about MND-SMART, but do now, and have registered with them
I am doing my best to deal with it by thinking I am exactly the same guy and I feel the same as I did before I was told about it
My speech varies from day to day, yesterday it is good at times, but bad when I was chatting to a friend of mine
I said to her, I know I don't sound good, she stopped me, tapped my chest and said “maybe, but we all know the good old Paul is still inside there”
and that's the point. I have something wrong with me, but I am still the same me.

Quite what I am doing posting at this time on a Sunday, I do not know, I'm sure that's nothing to do with MND

all the best
Paul

pje16 wrote:Hi Darrell
thank you so much for your wonderful reply
I didn't know about MND-SMART, but do now, and have registered with them
I am doing my best to deal with it by thinking I am exactly the same guy and I feel the same as I did before I was told about it
My speech varies from day to day, yesterday it is good at times, but bad when I was chatting to a friend of mine
I said to her, I know I don't sound good, she stopped me, tapped my chest and said “maybe, but we all know the good old Paul is still inside there”
and that's the point. I have something wrong with me, but I am still the same me.

Quite what I am doing posting at this time on a Sunday, I do not know, I'm sure that's nothing to do with MND

all the best
Paul

Hi Paul,

I hope you don't mind but I took the liberty of asking a question on Twitter for advice about MND. Now don't get me wrong I don't Tweet very often and I don't quite have the following of Gary Lineker. However, I did receive a reply and I'd like, if I may please, to leave this with you. Obviously I have absolutely no idea how beneficial this will be, but as I've mentioned it's my way of supporting at a time when you may be feeling a great deal of apprehension.

Motor Neurone Disease Association

I've also been told that there are some excellent sources of advice on social media and one that has been mentioned is 'MND Warriors United' on Facebook.

There's a tough road ahead Paul. Hopefully it will be forgiving enough to rise up and meet your feet and you will be able to manage your symptoms reasonably well.

Take care

Darrell

pje16 wrote:

AsleepInYorkshire wrote:

Hi Darrell
thank you so much for your wonderful reply
I didn't know about MND-SMART, but do now, and have registered with them
I am doing my best to deal with it by thinking I am exactly the same guy and I feel the same as I did before I was told about it
My speech varies from day to day, yesterday it is good at times, but bad when I was chatting to a friend of mine
I said to her, I know I don't sound good, she stopped me, tapped my chest and said “maybe, but we all know the good old Paul is still inside there”
and that's the point. I have something wrong with me, but I am still the same me.

Quite what I am doing posting at this time on a Sunday, I do not know, I'm sure that's nothing to do with MND

all the best
Paul

I know nothing of MND-SMART but I do know about two other medical charities and they both have very helpful phone lines on the end of which are nurses who can provide very helpful practical advice and comfort. These charities are often very underestimated in providing support for both the patient and, sometimes more importantly, the carer(s). They are both nominated in my Will.

I expect that MND SMART will be organised along similar lines. Neither I as the carer nor either of the patients (my late wives) were really in to coffee mornings, talks and the like but they are popular and clearly provide comfort for many. I found the advice the nurses were able to provide in how to cope, what to expect in the development of the condition and so on to be particularly valuable. As I said, for the carer at least as much as for the patient. I found that the hospital medics did not have the time nor were they equipped to deal with the emotional nor the day to day practical side of matters

Just remember Paul, you are not alone. There is a lot of help available if you want/need it. You just need to find it.

And for what it is worth, we will all be thinking of you as well, I am sure.

Best wishes

Dod

AsleepInYorkshire wrote:

Thanks Darrell
I did know about the Motor Neurone Disease Association
as my excellent neurologist,
(I am so glad I happened to be lucky enough to get her to treat me
each time I have seen her she writes a summary of what we have spoken about and better still, then bullet points the next courses of action – AND she follows up on them)

Dod101 wrote:

Thank you as well Dod.
I, too, have left gifts in my will to the 3 hospitals who helped me twice as a kid (GOSH) and saved my life 4 years ago, The Royal Free in Hampstead and Harefield (a clue to what that was all about)
I'm off now to see a good friend about being a Certificate provider for my powers of attorney – oh the joys of life.

I am so pleased to get any suggestions of help as this is a new and strange world for me
thanks again to you both

Paul
I don't think I can say much but here's a hug if you like those
((((Paul))))

Sunnypad wrote:

Thank you, @Sunnypad, that started my day with smile

pje16 wrote:I have just been diagnosed with Motor Neurone Disease.

What rotten luck. There does seem to be an increasing incidence of these awful nerve disorders.
I’m feeling for you, can’t say much more, and I hope some of the research comes in time for you.
My very best wishes!

quelquod wrote:I’m feeling for you, can’t say much more, and I hope some of the research comes in time for you.

Thank you @quelquod
The MND Association have an event in June where you can meet and chat with researchers
so I am going along to that
Wow, how my world is changing

Oh dear, I am so sorry to read your news. I hope that the diagnosis will, at least, allow you to understand and deal with the symptoms you have been experiencing - even if the diagnosis that must have come as a shock. I think your friend's point that you are still the same person as you were before the diagnosis is a great one and we all look forward to continuing to read your posts on TLF.

Best wishes & take care
Clariman

Words fail me. In my experience It is unfailingly the nice people that these things seem to inflict.
I'm so sorry man, all strength to you and your family.
Leo