Close Relative - possible MND?

[Positive vibes]

Hello all!

This is my first post, and I am really hoping for a bit of advice, thank you.

I have a relative who is convinced he has MND, yet, isn't pursuing a proper diagnosis. He has done a 'Dr Google' search and concludes that he has all the symptoms. However, after a long period of trying to see a GP (phone appointments for several months, final face to face recently) his GP is referring him to geriatrics only. And we don't know how long this will take, given the pandemic and much broadcasted waiting lists.

My chief concern is that this seems to be progressing rapidly, and a quick browse on-line seems to suggest that there is medication to slow this a little, plus other things. I realise that I am pretty much useless to help him as he is refusing any help at the moment.

Any tips? I don't know if he is just giving up to fatalism, depressed, stressed, in denial, or all of these things.... I can understand him feeling this way (over 80 years old), his partner is also on referral for memory clinic (possible early dementia?) and COPD; with other stressful stuff going on in real life that would be too identifying on here.... Help!

I feel I may be clutching at straws here, but, any way that I can persuade him to look to his self care, would be very much appreciated....

[Suefromwakey]

That's a lot of stuff to be going on.........I cant really help but I am sure others will come on, just wanted you to know that I had read your post, the only thing I can say is that I do not know of anyone with ALL the symptoms of MND as there is no text book diagnosis whatsoever - everyone is different and presents with many different problems - the main reason it can take years to get a proper diagnosis,

Best wishes

Sue

[denise]

At first I thought perhaps you get to an age when you think that something is going to get me so why do I need a label for it. My dad knew he was ill but it was my mum and aunt that persuaded him to keep going back to the doctor. He eventually got a diagnosis and died not long after. I do believe he just gave up when he found out what was wrong. On the other hand why did your relative Google it? The thing is you can't make someone go to the doctors. Some just don't want to spend their lives going from waiting room to waiting room. Just say you're there if he changes his mind.
Denise xx

[Positive vibes]

Hello Suefromwakey

That's very kind of you to acknowledge my post; I apologise in advance, I realise that I may be worrying before any proper diagnosis is made, and he may well be over-anxious himself with everything going on. I think it's the speed of progression with his deterioration that is the concern. I don't know enough myself to be certain, he describes his symptoms as (and I have witnessed some of these):

Weakness of grip in both hands, particularly right hand, unable to hold a glass of water without supporting hand underneath. Difficulty in strapping in seat belt.
Loss of arm strength - he can't lift anything heavy, not even a kettle of water.
Falls - several within last few months. Unable to use arms to lift himself up. Roll over to use knees only.
Speech - slurring of words, difficulty getting out right words, slower thinking.
Slower physical reactions generally.
Worse memory.
Slower eating. Needing to sip water to help swallow.
Bad cramps in lower legs, especially at night leading to poor sleep, especially if try to exercise later in the day.
Generalised pains (Note: FM diagnosis years ago, on painkillers)
New symptoms - difficulty in having bowel movements, this hasn't been a problem before (Note: previous diagnosis IBS)
Fatigue - difficult as disturbed sleep anyway from night cramps.

Although his age has steered GP towards the generalised geriatrics referral, 6 months ago he was actively dog walking up to 1 -1.5 hours a day, using arm weights, treadmills and cross-trainer (at home), able to do several cross-words a day, walked to fetch the daily paper. We are not sure if he has emphasised this enough to the GP (unaccompanied appointment). Since he is now unable to lift weights, apprehensive of dog walking due to falls (tries short 15 minute walks with partner), no other exercise, difficulty completing crosswords.

I realise that this might be mistaken for other possible diagnoses, but, haven't investigated these as he has already made up his mind!

[Positive vibes]

At first I thought perhaps you get to an age when you think that something is going to get me so why do I need a label for it. My dad knew he was ill but it was my mum and aunt that persuaded him to keep going back to the doctor. He eventually got a diagnosis and died not long after. I do believe he just gave up when he found out what was wrong. On the other hand why did your relative Google it? The thing is you can't make someone go to the doctors. Some just don't want to spend their lives going from waiting room to waiting room. Just say you're there if he changes his mind.
Denise xx

Hello denise

Thank you for posting your personal story; I am so sorry about your Dad, that must be so painful for you all.

I think this is a real concern - that he may be partly in denial. Yes it's strange, it's like he wanted to find a quick answer himself, but it's almost like he has already given up without any diagnosis.

I have already offered to help him any time he needs me, trying to get him out of the sad place he is in now, to give a positive for what he can do (rather than him obsessively focusing on what he can't do). You are right - at his age, what is the more stressful? If this is what he has, he may be 'choosing' what to do already by actively avoiding any medical help/diagnosis, since I know he hates hospitals, etc. Incredibly sad times....

[Gordan1111]

Hi - just to concur with Sue. It can be hard to get a diagnosis. MND can appear to be many different things. I would have thought if GP thought chance of MND whatever his age, he\ she would refer to neurologist to set mind at rest least. Best wishes

[Lynne K]

Hi, I’m sorry about the loss of functions for your loved one. I think a neurological investigation is the only sure way to confirm or illuminate a possible MND diagnosis. But sadly even neurologists miss diagnose sometimes and hence lots of us have a bit of a run around before we have our confirmed diagnosis. But if your loved one chooses to sit down and die (please excuse my bluntness, it’s coming from love) then there is little that you could do except as you say be there for them and be helpful in any way that you can.

One concern though which you could share with them is that when a diagnosi is received doors open for various support services. Love Lynne x

[SueM]

Positive vibes , sorry to read your story, seems to be a lot going on with your relative and his wife. I appreciate you may feel a Geriatrician isn’t the right way to go, but it is likely that appointment would come sooner than a referral to a Neurologist. My referral took 5 months and I’ve read various accounts on the forum of folk waiting longer then choosing to go privately, at least to start their journey. I’ve worked with several excellent Geriatricians, I’m fairly sure they would have started the ball rolling Re investigations and also referral to an appropriate Consultant if necessary.
Also just wondering how close a relative you are, my sister takes responsibility for our elderly mum and has organised with mum and her GP that she can speak to them on Mums behalf

[Mary C]

Hi, would your relative agree for you to write to the GP and maybe copy in the practice manager at his GP practice the list of symptoms and time frame you have put on here.If nothing else it would be useful to the GP to add to referral to the consultant for older people?I used to be a social worker in a GP practice and in my experience it is helpful to write in as it has to be scanned into the medical records.
I don’t presume to know if your relative has appointed a lasting power of attorney? or at a minimum if he would be able or willing to contact his GP to give permission for GP to talk with you(again needs a written request to gon records...as long as he has the mental capacity to make that decision).
Just trying to be helpful.As others on this site have said there is no one test for MND, no predictable pattern either.
Also his partner presumably has agreed for a referral about her memory.Again with partners permission given to the GP that could be followed up(ie which Consultant and where is consultant based.Some surgeries refer to a clinic for an early memory screening assessment.
Hope this helps...Best wishes.Mary

[matthew55]

I know I got mine from my lovely mum and so far I'm still the really lucky one! Life really is too short to worry about stuff that may never happen. Isn't it? 😍x

[Positive vibes]

Hi - just to concur with Sue. It can be hard to get a diagnosis. MND can appear to be many different things. I would have thought if GP thought chance of MND whatever his age, he\ she would refer to neurologist to set mind at rest least. Best wishes

Hello Gordan111

Sorry for the delay in replying to you, and everyone.

Thank you, its some comfort that the GP may feel its not MND.

[Positive vibes]

Hi, I’m sorry about the loss of functions for your loved one. I think a neurological investigation is the only sure way to confirm or illuminate a possible MND diagnosis. But sadly even neurologists miss diagnose sometimes and hence lots of us have a bit of a run around before we have our confirmed diagnosis. But if your loved one chooses to sit down and die (please excuse my bluntness, it’s coming from love) then there is little that you could do except as you say be there for them and be helpful in any way that you can.

One concern though which you could share with them is that when a diagnosi is received doors open for various support services. Love Lynne x

Hello Lynne

I have had a browse through more introductions, and I find it a bit scary that it can take so long, so many investigations and still be misdiagnosed/missed. Renewed respect to everyone on here for fighting on and getting a diagnosis.

That's the toughest part - selfishly I don't want my relative to give up (he's my Dad) as I love him and I don't want to lose him. But I have not been in his shoes, I don't know how much pain he is suffering, or, how he feels about losing so much of his day to day capabilities. It hurts so much.

I am trying to accept that this is his decision - to not act, not seek help, but it is tearing me apart (and Mum).

That's one positive I can take away, thank you, the opening of doors of support.....

[Positive vibes]

Positive vibes , sorry to read your story, seems to be a lot going on with your relative and his wife. I appreciate you may feel a Geriatrician isn’t the right way to go, but it is likely that appointment would come sooner than a referral to a Neurologist. My referral took 5 months and I’ve read various accounts on the forum of folk waiting longer then choosing to go privately, at least to start their journey. I’ve worked with several excellent Geriatricians, I’m fairly sure they would have started the ball rolling Re investigations and also referral to an appropriate Consultant if necessary.
Also just wondering how close a relative you are, my sister takes responsibility for our elderly mum and has organised with mum and her GP that she can speak to them on Mums behalf

Hello SueM

That's some consolation, thank you, I thought the GP was fobbing him off to be honest.... with all that's going on with the pandemic.

I already have permission to talk to GP's etc for Mum (on referral for memory clinic and COPD) as Dad is finding her difficult to cope with, and they are both happy with this as she also has a lot of other health problems. I did ask Dad if he wished this too, but, he is very independent and always the one who sees himself as looking after everyone else. So, he still feels he is in that role and doesn't want to feel he is giving that responsibility to anyone else.

I really worry though that is just his way of not dealing with it, with all else going on, unfortunately Mum accidentally caused a fire and there is a whole lot of stuff I am helping them on with that.... I do wonder if the stress of it all is making him worse/ill.

[Positive vibes]

Hi, would your relative agree for you to write to the GP and maybe copy in the practice manager at his GP practice the list of symptoms and time frame you have put on here.If nothing else it would be useful to the GP to add to referral to the consultant for older people?I used to be a social worker in a GP practice and in my experience it is helpful to write in as it has to be scanned into the medical records.
I don’t presume to know if your relative has appointed a lasting power of attorney? or at a minimum if he would be able or willing to contact his GP to give permission for GP to talk with you(again needs a written request to gon records...as long as he has the mental capacity to make that decision).
Just trying to be helpful.As others on this site have said there is no one test for MND, no predictable pattern either.
Also his partner presumably has agreed for a referral about her memory.Again with partners permission given to the GP that could be followed up(ie which Consultant and where is consultant based.Some surgeries refer to a clinic for an early memory screening assessment.
Hope this helps...Best wishes.Mary

Hello Mary C

That's a good tip - I will ask him if that's ok for me to do. Then at least they would be aware that its a sudden deterioration and not just assume its the increased fragility of old age alone. He is old school fiercely independent though, so, I doubt he will give permission for me to talk on his behalf. At least, not yet....

Fortunately, they both have sorted LPOA, for myself and sibling - they have done sensible planning. And Mum agreed for me to talk to medics on her behalf with written permission. GP's are chasing for her referral.

[Positive vibes]

I know I got mine from my lovely mum and so far I'm still the really lucky one! Life really is too short to worry about stuff that may never happen. Isn't it? 😍x

Hello matthew55

This is what I am trying to do, not worry about him, but it is really tough to see someone so close to you struggling.... We will have to adjust to what he can do, and not stress about what he can't do.

When lockdown hopefully lifts, I want to take them both out and about, so they can enjoy life more, whilst Dad is still physically able to do so, and whilst Mum still has some awareness (even if she might not always remember). I can see a camera getting a lot of action to help her on this....