Finding comfort

[dawn c Forum Member Find all posts View Profile Close dawn c]

Hi all, I was diagnosed September 2017 mnd/als. I was having an emotional day when my son suggested this forum, so glad I dipped my toe.! Thanks guys.

[Doug Carpenter Forum Member Find all posts View Profile Close Doug Carpenter]

Welcome Dawn!

You'll find a wealth of information and support here.

Doug

[shrew Forum Member Find all posts View Profile Close shrew]

Welcome Dawn. My Husband was diagnosed July 18 with same type

[Kayleigh Forum Member Find all posts View Profile Close Kayleigh]

Hi Dawn,

Welcome to the forum.

There is a lot to come to terms with due this diagnosis, and I still get emotional about things sometimes. However, since joining this forum, I have found a lot of friendly support from the wonderful people here. We help each other out with support and advice, as much as we can.

Hopefully, by now, you are receiving regular support from NHS professionals eg a specialist nurse, occupational therapist, physiotherapist, speech and language therapist and dietitian.

Please don't be shy about joining in on this forum as much as you like.

I hope you are having a lovely weekend.

Best wishes,
Kayleigh

[Barry52 Forum Member Find all posts View Profile Close Barry52]

Hello Dawn and welcome.

Many of us have emotional days and we sometimes need to have a rant. This is the place to do it as we understand the difficulty when dealing with MND. You will find support, advice and occasionally humour to relieve the pressure.

Best wishes and keep in touch.

Barry

[Lynne K Forum Member Find all posts View Profile Close Lynne K]

Hi Dawn. Welcome to the forum. As you will see by my tag lines I was diagnosed November 2017 so pretty near to when you were diagnosed. I'd seen a neurologist 10 or 12 months earlier and ought to have had tests organised then and got an earlier diagnosis. I agree with previous posts that we all have emotional melt downs now and again, but more so at the beginning of our MND journey. I look forward to chatting with you. Take care, Lynne x

[Ellie Forum Member Find all posts View Profile Close Ellie]

Welcome Dawn, glad you found the Forum - bravo son

Love Ellie.

[dawn c Forum Member Find all posts View Profile Close dawn c]

Thank you for all your kind words, it's a great forum. I'm very fortunate to have a great family to get me through this, even better knowing I'm part of this forum family too. X

[Guest Close Guest]

Welcome Dawn. This forum really helps me. It's good to chat and ask advice from people who get it x

[Kayleigh Forum Member Find all posts View Profile Close Kayleigh]

Hi Dawn,

It's great to hear that you have lots of support from your family.

Please don't hesitate to ask us for support and/or advice, whenever you like. We 'chat' about a range of issues affecting our lives - and sometimes we go 'off topic', with subjects like our favourite music and the 'Six Nations Rugby'.

Very best wishes to you and your family,
Kayleigh x

[Sheila Forum Member Find all posts View Profile Close Sheila]

Hi everyone! I was diagnosed just 2 weeks ago. I have had symptoms for over a year. My husband and son have been a wonderful support. Still trying to get my head around it all! It is odd but I feel worse now that I know I have mnd. I am a very anxious person as well. My nerves are shot to bits!! Eating and sleeping has been nigh on impossible.

[Ellie Forum Member Find all posts View Profile Close Ellie]

Sorry you find yourself here Sheila but a warm welcome to you.

Your diagnosis is still very raw, so it’s only natural your head is all over the place - it does get easier with time.

I found counselling helped me in coming to terms with my diagnosis and, given that you say you’re an anxious person, it certainly should help you and I suggest you give it a go.

I wonder if an antidepressant might help you sleep and, in turn, your appetite, even in the short-term? Not being able to sleep or eat well isn’t ideal - we need as much energy as possible to deal with our condition!

Wishing you and your family well.

Love Ellie.

[Terry Forum Member Find all posts View Profile Close Terry]

Hi Dawn and Sheila, welcome to the forum,

It normally takes a couple of months to get your head into gear after a diagnosis such as this.

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

Best wishes, Terry

[Kayleigh Forum Member Find all posts View Profile Close Kayleigh]

Welcome to the forum Sheila,

I feel for you, because the way you are feeling now, is how I felt when I was diagnosed last year. I felt so anxious about things that I couldn't eat, sleep or relax and I kept bursting into tears. However, since joining this forum, I have managed to come to terms with things, and me and my family are able to make the most of every day, as positively as we can. I have also received wonderful support at monthly meetings of my local Mnda group.

Understandably, everything can feel overwhelming at first. I found that speaking to my local MNDA Regional Care Development Adviser, soon after my diagnosis, really helped. For some friendly support and advice, you (or your husband) could speak to someone at the MND Connect helpline, and either of you could contact your local Adviser. For further info about the local Advisers, please click on the link below:-

http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

You will get a lot of friendly support from the lovely folk on this forum. Please feel welcome to ask for support and advice, whenever you would like to.

Very best wishes to you and your family,
Kayleigh x

P.S It is important that we try to keep our strength up by eating well. I have found that nutrition drinks, such as Complan with full-fat milk, have helped to boost my calorie and vitamin/mineral intake. Your GP might prescribe some for you.

[Barry52 Forum Member Find all posts View Profile Close Barry52]

Hello Sheila and welcome.

As others have said it will take a while to be able to move forward but you will adjust. Make sure you have a good care team to support you and any advice you want will be answered here.

Best wishes,
Barry