Hello, I'm a new member

[Catscho]

Hello, my husband was diagnosed with MND 3 weeks ago. He is 76, and we think/hope/pray that a) he was diagnosed very early, and b) he might be on the slow-evolving side of statistics.
That is our assessment now, after the initial shock which was rather awful. He's had symptoms for less than a year, pains in his thighs muscles mainly, and keeps going on the treadmill at the gym 3 times a week. He monitors his activity carefully, and makes sure that he doesn't push himself too hard. Admittedly, he fell yesterday.
As we're still waiting for the referral to the neurological hospital, I'd be interested in the opinions of those more knowledgeable than us: when the start is slow, will it keep on being slow to develop ? In other words, do we have 10 years rather than 3?
Thank you for your patience and support.
Catherine

[Terry]

Hi Catherine and welcome to the forum,

Sorry to hear about your husband's recent diagnosis.

I think that the best way of having a chance of living longer is to keep well narished and moving but not over doing anything. Not all of us can do much for long. Get plenty of rest when needed. Accept any equipment etc that is offered.

Please feel free to ask any questions or share things with us.

Best wishes, Terry

[Ellie]

Hi Catherine and welcome to the Forum.

Sorry to hear of your husband's MND diagnosis.

It's impossible to answer your prognosis question, I'm sorry to say.

But.... from how you've described your husband's symptoms, he appears not to have much (any??) clinical weakness, which is good. You say his leg muscles were sore, perhaps from spasm, but he can still do regular treadmill sessions - another good sign one year on.

Has he any other symptoms?

Did he have an EMG test, do you know?

I'm sure the MND specialist will be able to give him a more detailed diagnosis, as in if it's both upper and lower motor neurons that are involved.

In the meantime, as he's found out, MND affects our balance, so it is terribly important not to fall!! And yes, that probably will mean having to use mobility aids when it's the last thing he wants to do, but falls can be dangerous

Has an OT assessed him? (OT = occupational therapist)

Love Ellie.

[Catscho]

Thank you Terry and Ellie for your replies.

Yes he's had an EMG as part of his assessment, and it revealed that he had denervation of the distal and proximal lower limbs, but also "denervatory changes" in the distal upper limbs and the mouth and thorax muscles.

Since diagnosis, we haven't had any contact other than with his very good GP, and were indeed warned that it might take 3 months for the referral to transform into a consultation with the neurologist at Queens Hospital (London)!!

Best wishes,
Catherine

[Terry]

Hi Catherine;

Maybe get in-touch with your local Mnda group and see about any meetings. 3 Months is a long time to get a referral, especially if he has any problems.

Love Terry

[Barry52]

Hello Catherine and welcome to the forum.

I’m sorry to hear that your husband has been diagnosed with MND but what you say about him suggests he may have a slower version of the disease. Falls can be one of our biggest dangers as we tend to avoid walking aids until we have a injury.

The Royal London and Barts have a dedicated MND care team as does Kings so you may want a referral to those.

Best wishes,
Barry

[Ellie]

Assuming the EMG also showed reinnervation and chronic neurogenic changes, Catherine and your husband is not showing signs of wasting (atrophied) muscles, it would suggest that he has a slower form of MND. Hopefully he will continue to progress slowly.

There are a few other Forum members who also attend Queen's - it's also an MND Care Centre with a multidisciplinary team.

Best wishes to you both.

Love Ellie.

[nunhead_man]

Hi Catherine

Welcome!

when the start is slow, will it keep on being slow to develop ?

Generally speaking, everybody's MND is their own and everyone is different, but the information I have is that once you start slow you carry on slow.

The trouble is that everyone is a sample of one and so it is very difficult to know.

If it helps, it is different to multiple sclerosis, which I know well from my father-in-law who died recently, where as you may know the damage occurs in fits and starts.

I have had lots of help from here and I look forward to seeing you back when you need more as I am sure you will.

Would your husband be joining us?

[Scotty]

Dear Catherine
your husband's experience sounds similar to mine - I was diagnosed in June. I do hydrotherapy to keep muscles moving and chair pilates.. Am surprised you didn't mention that you have an MND nurse - or rare conditions nurse as mine is. they are very supportive and should come out and see you and discuss concerns and make referrals etc.. but perhaps that comes via the neurologist consultation.. but be assured they are very supportive and helpful. And I agree with someone's comment about joining local MND group - I've only been twice as it meets bi monthly, but it IS very supportive and positive... not what i expected. and you can share stories and things that help.. All the best..Eileen

[Gillette]

Dear Catherine
your husband's experience sounds similar to mine - I was diagnosed in June. I do hydrotherapy to keep muscles moving and chair pilates.. Am surprised you didn't mention that you have an MND nurse - or rare conditions nurse as mine is. they are very supportive and should come out and see you and discuss concerns and make referrals etc.. but perhaps that comes via the neurologist consultation.. but be assured they are very supportive and helpful. And I agree with someone's comment about joining local MND group - I've only been twice as it meets bi monthly, but it IS very supportive and positive... not what i expected. and you can share stories and things that help.. All the best..Eileen

Hi Eileen,

Unfortunately, not all MND nurses offer a visiting service - certainly not those at the Salford clinic. However, we can ring them and leave a message at any time which will return (although sometimes it takes a while).

[Catscho]

Andy, thank you for your reply. Your own history fills me with hope for my husband, who feels rather stronger now than a few months ago!
So for the time being we're trying not to think about the disease, and we've sort of decided that "denial is good", until his condition starts to deteriorate. But this is all so recent... it will be 4 weeks on Tuesday. The shock totally cut down his appetite the first two weeks and he's lost some weight. That is definitely good and he can lose some more before we worry.
So we'll see.
I am sure he will post on the forum some time, but not just now.
Best wishes,
Catherine

[Catscho]

Dear Eileen,
Thank you for your message.
We don't have an MND nurse, because we don't have anything yet! We're trying to activate his referral to the neurology hospital, and we try to remain neutral about the slowness of it all, thinking that he doesn't need much support for the time being as he feels rather better now than before the summer. So, fingers crossed and let's hope that his current state lasts weeks rather than days, and months rather than weeks.

Thank you so much to all of you who have replied my message in a bottle! This is a good place to turn to when the going is rough.

Catherine

[Catscho]

Thanks Barry, we'll see how it evolves.
Best wishes,
Catherine

[Terry]

Hi Catherine,

There is nothing wrong with living your lives as good as you can. Sometimes weight loss can be a good thing if he is very over weight but do make sure that he has a balanced diet and eats good things regularly.

Weight loss is normally regarded as a bad thing with Mnd so keep a eye on his appetite and eating.

Love Terry