New here

[Marc from London]

Are you in the NHS system now Marc? xx

Hello Ellie

yes I am. The MND specialist has continued with NHS care for me after diagnosis was concluded. I only went private initially because I had insurance and never used it before. x

[Marc from London]

Hello Marc
im also slow progression
you are not alone….I’m largely ignoring it; I’m still mobile (a bit wobbly) , still working, still golfing ,still drinking, don’t do DIY anymore, wife doesn’t trust me with sharp objects and ladders.

Since my diagnosis (nov2019) have only seen GP 3 times and that was me making appointments to get referrals to other NHS services
The only thing they offered was counselling for my wife !

shaun

Hi Shaun

Good to hear from you. Seems we have some things in common. I too am working and lead an almost normal life. When I walk down the street or go shopping people don’t see that something is wrong with me but I know I am different to all the people around me. I work mostly from home. Once a week maybe I go to the office. That’s then when I have to be careful so that no one notices that my left hand does. It seem quite right. I have not told anyone at work about it. For now I want to be treated normally. But at some point I will have to tell them.
Other then this I too have my regular ‘medicinal’ drink. Mostly red wine. Yeah and anything that distracts me is largely welcome.

take care and all the best to you
marc

[Marc from London]

Marc from London

Sorry you have joined the club but there is great support and knowledge here.

My husband was diagnosed in July 2020, his hands were affected, both at the same time. And we missed about at least a year thinking it was other things.

Husband has chosen not to have a PEG fitted and is now starting to really lose weight. The dietician, SALT and social workers plus MND nurse are good (the system is slow because of COVID and other things) but GP in our origninal area was awful very hands off and no communication unless we pushed.

Now we are in a different area (to get an accessable flat for wheelchair access) the GPs are amazing, so it is very post code lottery.

Husband and I were already a member of Dignity In Dying and the Humanist Society. Unfortuately for my husband the rapid onset after a time. Meant Switzerland was out.

It is a confounding issue and a number of people with MND have been part of the people taking the Government to court for the right to die. I am happy to still have my husband here with me but he is frustated with his disabilities at the moment. Which is entirely understandable.

Best wishes

Dear Donna

thanks for your message. I am sorry to hear you and your husband have to go through this pain and suffering. You raised an important topic around assisted suicide. I too feel the government needs to do more to finally bring peace and dignity to people who suffer. I am vary about the fact that a Switzerland trip needs 3 month preparation before the final step can be taken. A deadline I am keen not to miss.
I have read form various members here that It takes some luck to get a GP that takes a more caring approach. Good you have GP that you feel comfortable with.

all the best to you and your husband.

marc

[DeeH]

Hello Marc
im also slow progression
you are not alone….I’m largely ignoring it; I’m still mobile (a bit wobbly) , still working, still golfing ,still drinking, don’t do DIY anymore, wife doesn’t trust me with sharp objects and ladders.

Since my diagnosis (nov2019) have only seen GP 3 times and that was me making appointments to get referrals to other NHS services
The only thing they offered was counselling for my wife !

shaun

Hi Shaun

They offered my husband a clinical psychologist. He said no but my wife would like to talk to him. But the answer was no for me!!!!

I had to push to get a weekly Family Support phone call from the local Hospice. Alison is a wonderful person who listens to me rant about the stupid system and other frustrations, for 60 minutes on a Friday.

[Shaun]

Hello Marc
im also slow progression
you are not alone….I’m largely ignoring it; I’m still mobile (a bit wobbly) , still working, still golfing ,still drinking, don’t do DIY anymore, wife doesn’t trust me with sharp objects and ladders.

Since my diagnosis (nov2019) have only seen GP 3 times and that was me making appointments to get referrals to other NHS services
The only thing they offered was counselling for my wife !

shaun

[DeeH]

Marc from London

Sorry you have joined the club but there is great support and knowledge here.

My husband was diagnosed in July 2020, his hands were affected, both at the same time. And we missed about at least a year thinking it was other things.

Husband has chosen not to have a PEG fitted and is now starting to really lose weight. The dietician, SALT and social workers plus MND nurse are good (the system is slow because of COVID and other things) but GP in our origninal area was awful very hands off and no communication unless we pushed.

Now we are in a different area (to get an accessable flat for wheelchair access) the GPs are amazing, so it is very post code lottery.

Husband and I were already a member of Dignity In Dying and the Humanist Society. Unfortuately for my husband the rapid onset after a time. Meant Switzerland was out.

It is a confounding issue and a number of people with MND have been part of the people taking the Government to court for the right to die. I am happy to still have my husband here with me but he is frustated with his disabilities at the moment. Which is entirely understandable.

Best wishes

[Ellie]

I went through diagnosis as a privat patient

Are you in the NHS system now Marc? xx

[Marc from London]

Marc from London I had my diagnosis via NHS Neurologist. I don't hear anything from my GP as its essentially the consultant and MND team that take responsibility for my Neurological care.

I would only expect contact from my GP to offer me a seasonal flu jab.

hello Tabbycat

i think I am being a touch naive here. Thought my GP may invite me for a catch up after all the correspondence they have received. But guess it also depends on the GP. Some may check in with patients some won’t.

anyways have a good weekend
best
Marc

[Tabbycat]

Marc from London I had my diagnosis via NHS Neurologist. I don't hear anything from my GP as its essentially the consultant and MND team that take responsibility for my Neurological care.

I would only expect contact from my GP to offer me a seasonal flu jab.

[Marc from London]

Hello Marc, very sorry to hear about your diagnosis. My husband Chris has the same attitude as you, he just accepts things and gets on with it. He's in his 4th year since diagnosis and works with what he's got, at the moment that's some small use of two fingers on his left hand.
Anyhow we have minimal input from the GP, but they do respond quickly if needs be and we have a special number to phone out of hours that gets us to GP faster and bypasses 111. It's an elite club but we'll take what we can.

Hello

Sorry to hear your husband too suffers from MND. I went through diagnosis as a privat patient I think it because of this that I don’t hear anything from my GP.

Anyways. Stay strong.

best wishes
Marc

[Marc from London]

I have the same attitude as you. Will continue on at the moment buy wish there was a small pill in my bottom draw that I could take when I feel the time has come to go it’s not yet but I suspect it will come.Simply don’t want to bè kept alive if there is no quality of life.

Hi Adian

its an unthinkable situation to be is as we are. But it is what it is. I too was hoping for some pill in my drawer. Dignitas in Switzerland offer the full package from pill to cremation. That’s why I signed up with them. I know the day will come that I fly out of UK for the last time. For now I distract myself and try not to think about it and hope I can enjoy the summer.

best wishes

Marc

[Aidan in Shrewsbury]

Hi Marc. I’m further down the road then you but similar onset and slow, but inevitable, progress. Discovered early on that GPs just don’t get involved but that’s not a problem. I think we all find our own way of coping but one thing I’ve found is to look at anything that makes life easier (struggling against it is just exhausting). I have found the slow progress has allowed me to get used to the new reality.

Pretty much exactly the same experience for me Tony. The frustrating thing is being able to do slightly less on an almost weekly basis. Try to stay positive but it’s not easy.

[Aidan in Shrewsbury]

Hello James

thanks for your response

i agree that the disease is not experienced in the same way for each of us here. I am not opposed to any medical advances and would take a chance is offered. My wish to decide by myself when it is time to go is mostly down to how my late father suffered towards the end. It was so bad that I felt great relief when he finally died. I just promised myself back then that I would end it before I would reach such a state of suffering. Without knowing it back then that one day I would be in the situation myself. I am not scared to die. I don’t want to die but I don’t want to suffer either. The future, as it seems, will hold some difficult decisions

Until then I will try to stay afloat for as long as I can.

Best wishes
Marc

I have the same attitude as you. Will continue on at the moment buy wish there was a small pill in my bottom draw that I could take when I feel the time has come to go it’s not yet but I suspect it will come.Simply don’t want to bè kept alive if there is no quality of life.

[Music man's wife]

Hello Marc, very sorry to hear about your diagnosis. My husband Chris has the same attitude as you, he just accepts things and gets on with it. He's in his 4th year since diagnosis and works with what he's got, at the moment that's some small use of two fingers on his left hand.
Anyhow we have minimal input from the GP, but they do respond quickly if needs be and we have a special number to phone out of hours that gets us to GP faster and bypasses 111. It's an elite club but we'll take what we can.

[matthew55]

Welcome to the family 😊👨👩👦🤗😊xx