New member, newly diagnosed

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

Hello,
I was diagnosed 3 weeks ago, following being admitted to hospital following after yet another fall.
I have had symptoms for 3 1/2 years, but I had another condition which masked the symptoms.
I have been fighting to get to see a Neurologist, but Covid came along, and understandably delayed an appointment.
I have been told it is a slow progressing form, but since coming home from hospital, it has speeded up.
I am not scared of dying, but what upsets me is the thought of what my loved ones will go through.
Sending love to you all. x

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

Hi Gwynie

Welcome to the group that no-one wanted to join but having arrived find they are amongst very understanding friends who have MND or have partners or family with MND. Here you can ask whatever you want and someone will be able to offer advice, you can laugh, cry and shout and scream and we have all done that.

Take one day at a time and always find time to smile.

Take care.

Richard

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

Hi gwynie
sorry u have had such terrible news!
I 2 not scared of dying , just feel terrible that my family has to come along for the ride!!
we will do this stay strong
big hugs pat x

[Positive vibes Forum Member Find all posts View Profile Close Positive vibes]

Hello Gwynie

I am sorry to read about your diagnosis.

If it's any help, Dad has just been diagnosed, and after our initial shock, tears, before the reality of it sinking in, we all put our heads together, Mum and Dad included, about how best to support him. We all want to just knuckle down and be there for him, just as he and Mum have always been there for us, with love and hopefully some banter and fun along the way.

None of us wanted this to happen, but, we have all accepted it in our own way. Don't feel bad about it, it just is, and its not going to stop any of us helping him and making sure he is as independent as possible (so he still exercises a bit). It feels a bit like we are welcoming an unwelcome guest into the family, who we are tolerating, but, making sure the 'guest' doesn't become over-whelming to any of us. But Dad is still Dad.

Definitely, communication is the key thing, have a real good candid discussion. What you want (and just as important what you don't want), for Dad, this is just for things to be as 'normal' as possible, no fuss, and now he is accepting a few adaptations that give him that independence e.g. insulated travel mug now his grip is weaker (has an open, good grip handle, keeps his tea warm for longer now he drinks more slowly).

His day visit to MND (based at LOROS for us) has really been positive. He felt very looked after, was able to talk face to face to another MND sufferer, had a change from the same 4 walls, and also gave us a little respite from worrying about him, which I think we will probably need as this progresses.

So don't let the barista-steward grind you down! Get everyone on the same page, and, together face it head on.

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

A warm welcome to the forum, Gwynnie, sorry you've had to join us.

Hopefully your progression will slow down again and stabilise. And, no more falls, OK 😉 They're not good for us...

Look after yourself.

Love Ellie.

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

Hello from me too Gwynnie. Everyone on here are lovely people who between them will be able to help with any worries, questions or advice you may want. Just ask away.

[Gordan1111 Forum Member Find all posts View Profile Close Gordan1111]

Hello Gwynnie and welcome. x

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

Hi Gwynne

welcome. It's nice to hear from you.

love and hugs Denise xxx

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

Hi Gwynie and a warm welcome to the forum.

I'm so sorry for your diagnosis but glad that you've found us. The forum is a good place for friendship, support and advice. Ask away if you have any questions or just feel like a rant... We understand!

Take care of yourself,
Love Debbie x

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

Hello Gwynne and welcome.

Even though you have had symptoms for a few years, the recent diagnosis must still have caused a shock. If you don’t use a walking aid then I suggest you investigate as falls can result in serious injury. I was reluctant to accept the need for a walker but now I can’t take a step without it as my balance is shot. I hope you remain a slow progression case as sometimes the disease can accelerate and then slow down or plateau.

Best wishes,
Barry

[Mary C Forum Member Find all posts View Profile Close Mary C]

Hi Gwynie
Hopefully you will have been referred to a palliative care team or hospice.When I got diagnosed I nearly had a dickie fit when the hospice rang me the next week.I thought I must be a lot worse than I thought!!

The hospice team have reassured myself and my husband and offered practical and psychological support from first contact a year ago.

Take it steady and bit by bit hopefully your support network will help you as needed.
Think everyone who gets an MND diagnosis is shell shocked to some degree and so many thoughts flood into your head.
This is a great forum to share what you need to and for encouragement and advise .
With Best Wishes
Mary x

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

Hi Gwynie. Welcome to the forums were nobody really wants to be. But we all find these helpful and we all help each other. So shout up if you need anything.

I too hope that your MND stays as slow as now. Talk care, love Lynne x