New here

[Marc from London]

Hello All

I want to introduce myself here. I am 45 years old and felt some weakness in my left hand around March 2021. Then in October I was officially diagnosed with MND limb onset. And since then I mostly ignore the disease. I do have the some struggles with buttons or shoes laces. Also I suffer muscle twitches all over my body but not as bad that it would prevent me from sleeping. Everything else seems mostly normal. It leaves me wonder for how long though. My father passed away at age 60 also with MND. Doctors confirmed that my case is inherited. I have already joined Dignitas in Switzerland on the day I was diagnosed to end my life early if things go down south further. For instance, a feeding tube or assisted breathing are not something i would want to live with. I have two children almost teenagers. They know but have not fully grasped the full context yet. I am still working (office) and plan to do so for as long as I can.
So far l am not taking any medication



I have one question to the community here. What level of support did you get from your GP? In my case I have not heard anything from them yet.




Thanks

Marc

[EvelynMW]

You sound very like me, diagnosed via genetics, the fastest way. In my case, my left hand is petty useless and my right is much weaker. I was working as a part-time carer when diagnosed and felt obliged, due to my weak hands, to resign in March 2021.

i had to push or a referral from my GP. Once diagnosed, i only contact specialists in neurology, respiritary and occupational therapy All my GP does is dispense the drug riluzole which is supposed to add 10% to our lives. I am not aware of anything else i would need for myself fom my GP

PS I also joined Dignitas, but also Dignity in Dying who are trying to get the law changed in England.

[Marc from London]

Hello. Thanks for your response. I too had only contacts with specialists only needed a referral from GP at the very beginning once. I was thinking if GP would contact me since they have received an awful lot of correspondence. But I don’t hear from them so maybe it doesn’t matter. For now my left had has some weakness but can still use it to cut food and feed myself. But fine motor tasks are a challenge. Luckily I work on a computer and typing on a keyboard still works.

all the best to you
marc

[Ellie]

Marc from London A warm welcome to the forum Marc.

Your progression is very slow indeed so you're able to 'get away' with little input from healthcare professionals, so to speak.

Do you attend an MND Clinic? Do you know which type of MND you have?

Love Ellie.

[Marc from London]

Hi Ellie, thanks for your comment.
I do see a MND specialist at St. George’s Hospital in tooting/London. But it does appear as the disease is moving fairly slow with me scoring a high score (ALS-FRS-R) . With my late father that was a different story. He was gone in just over a year after diagnosis. I was diagnosed with a classic MND or ALS with limb onset in my left hand. For now I am just hoping it continues to be a slow progress but this diseases is unpredictable.
All the best to you
Marc

[Tony]

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.

[LindaB]

Marc from London welcome to the forum...look forward to hearing from you.

My palliative care nurse attends a monthly meeting at my GP surgery where cases are discussed (including me) so GP fully aware of my progression etc etc

I'm fortunate my GP seems supportive, however as with most things it's a post code lottery.

I'm under St George's👍🏻

[John D]

I’m fortunate to have an excellent GP who referred me to a neurologist for diagnosis when I started slurring. I am her 1st MND patient and have a review meeting with her every 3 months after blood tests and short notice appointments for various other medical issues in between if necessary. She is very responsive to requests from other teams in local hospital and hospice and King’s who are also excellent. I couldn’t ask for better care. I know this is not everybody’s experience in other areas of the country.

[Marc from London]

Hi Linda thanks for your response. I try to be active here as much as I can. With work and kids life is still very busy for me and I function well except for my left hand. It’s good to hear your GP seems to care more then what I see from my GP. But you are right. It’s post code lottery.

Got my next appointment at St George’s in June.

all the best to you
marc

[JamesW]

Hi Marc and welcome to the group ☺️

I was in a similar situation to you when I was diagnosed, I was 46 with a wife and a 10-year-old daughter at the time. I was still working and that included international travel. Because my progression is also slow I have been able to take my time with medical intervention and also plan ahead with regards to equipment etc.

I have to say my GP has been absolutely amazing to me and the family and he always makes time if I need him for anything (regardless of how busy he is), I guess I am very lucky in that respect.

It never ceases to amaze me how as a collective group we all have the same disease yet it treats us often so differently and each of us with different outlooks on the future. My wishes differ to yours in that I will take advantage of any intervention they can offer me, i’m not even sure I would have the courage to end it myself but I may feel differently about that as time goes on (who knows 🤷🏻♂️).

Take care,
James

[Marc from London]

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

[matthew55]

Welcome to the family 😊👨👩👦🤗😊xx

[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.

[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.

[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.