New and afraid.

[Carl]

Hello, my name is Carl, i am 59 and living in Surrey and here is my journey so far. Back in January I woke up with a stiff shoulder, blew that off as i am a lorry driver and always getting aches and pains. Over the next couple of weeks i lost nearly all feeling and grip in my right arm and my speech had started to be affected, so thinking a stroke may have occurred i went to A&E and was given MRI tests and no stroke was found. i then spent the next 7 months being tested and last Monday was given the news that i had MND. Even though i had been expecting it there was no preparing for this. I feel as if i am standing at the start of a long dark tunnel to which i know there is no light at the end, I am terrified of the future as I can only see anguish and pain for my loved ones. I'm even more terrified that i don't know what's going to happen next to my body and how long I'm going to be able to function for. I think I've said enough for my first post and hope it's not too heavy going.

[Piglet]

Carl so sorry about your diagnosis. You must be in turmoil at present and it is very daunting at first. My husband has MND diagnosed five years ago next week. He is still walking and still gets pleasure out of life. It will take some time but I feel you will start to accept it and begin to do everything you can do. As a wife it was terrible also at the beginning but With great support from family and his friends it hasn’t been as bad asI thought it would be. Give yourself time to adjust and really hope you get through this the best you can. Thinking of you at this time xx

[Carl]

Thank you for your kind words x

[JamesW]

Hi Carl,

So sorry that you find yourself here 😔

We are all in the same boat and you are amongst friends, we do our best to help and support each other. Things will seem very daunting right now but they will improve with time.

Hope to see you around.

Take care,
James

[Carl]

Thanks James, the worst part is not knowing how i will be affected by MND as everyone seems to have a different story. But on a plus knowing this forum is here is a relief.

[Zante]

Carl welcome to the forum Carl. I am sorry that you have found yourself here. I was only diagnosed in June. I am still trying to get my head around it some days. It takes time and the mnd nurse told me you go thru stages like with grieving.... denial, grief for the life you had and were to have , various stages before acceptance. Dont think I have reached there yet but some days are a lot better than others. I am still mobile and eating drinking etc ok. Try and keep living each day as it comes and give yourself time and self care. It's very very early days yet and there is no right or wrong way to try and adapt and accept this disease. You are in my thoughts. X

[Ellie]

Carl A warm welcome to the forum, Carl, so sorry you'd had to join us.

We know what a punch in the gut it is to get the diagnosis and it will take a while to get your head around what it means. It's impossible to think of the future really, it's just too big, breaking it into bite sized bits is more manageable.

But... life goes on and you will laugh and have happy times. Yes, there will be some dark and difficult days ahead but you will always find support, help, advice and laughter here from people who really know what you're going through.

Love Ellie xx

[Carl]

I can't express how much just this post has helped me. Thank you everyone xxx

[denise]

Hi Carl

I'm sorry you are going through this. My husband was diagnosed 5 years ago and has ftd as well. Yes every journey is different and difficult but taking one day at a time helps and focusing on what you can do and not what you cant.

We are all here for you so feel free to ask anything theres not a lot we haven't discussed on here.

Lots of hugs
Denise xxx

[Arcadian]

Sorry to read this Carl despite the impact and stress, do try to push early with your Doctor's Practice and hospital to make sure they are up to speed on resources and understanding regarding support, as well as considering a hospital with an MND multi-discipline team, even if it is further away.

[Carl]

Arcadian Thanks for the support. Its weird but after all the shock and tears we had earlier this week a quite calm seems to have fallen over our home. I think knowing now that i am not alone and there are people like yourself are being so supportive has made a huge difference.