Coming to terms with a new diagnosis

[JWright11]

Evening everyone,

I’m looking for some help! I’m in my 30s and have been living overseas for the past 18 months. I haven’t been able to come back to the UK until recently because the country I was residing in completely closed it’s borders, due to the pandemic. As soon as I returned, my dad (70s) was diagnosed with MND. His deterioration seems to have happened pretty rapidly. While overseas I had my second child, who is only now just meeting my family and friends, including my dad.
I am having a difficult time processing what has happened. My dad has gone from being a healthy, strong man, who was still working as an engineer, to someone who is unable to move unassisted. The whole experience is just complexity shocking to me; I can’t believe what has and is happening. I am in mourning for the grandad that my children have lost. Hopes of sleep overs at their grandparents house, holidays, day trips, fun filled christmases and birthdays have been completely decimated, and now I find my self having to explain to my 3 year old why his grandad can’t play and have fun with him and his little brother. I know that there are many people who have been struck by this horrendous disease a lot earlier than my dad, and I am more than grateful for the time I have had and the time that my children have with him now, but I can’t help feeling that I’ve been robbed of the next 10 years that I’d mapped out in my head. I’m not ready to lose him.
I guess I’m just looking for a little advice from others who have found themselves in this position.
Thanks,
J

[EvelynMW]

I am sure you will get great advice. In my case, it could be the other way around. My father is almost 98, my mother died from MND in 1979, so I haven't told him of my diagnosis and am hoping I wil never have to.

[Ellie]

JWright11 A warm welcome to the forum J, sorry you're struggling to come to terms with your dad's diagnosis.

I don't have much advice for you - I'm the one with ALS - but, as well as getting advice from other forum members who have been through something similar, maybe you could also ring the MND Connect helpline to talk to a trained adviser.

Love Ellie.

[Banned]

Always look to the bright side, it will help your dad enormously.

Move in with dad until his care is sorted. He will decline further but seeing his grandchild is all he wants.

[matthew55]

Welcome JWright11 It's far too much to take in all at once. Try taking little steps. We here have been where you are and we want to help you. 👍🤗🙏💗xx

[Gordan1111]

Hello JWright11 help with the little things, take the burden of sorting stuff out for him. Share the small pleasures with him. Give him your time. xx

[Lynne K]

Hi J. I’m sure that you’ll receive good advice from forums at this understandably difficult time. I agree for you to ring the MND Connect team who will listen and may have suggestions. Whatever’s going on it’s best to take each day as it comes as we’re all different and don’t know what the course of our demise will be. It’s great that you’ve been able to move back to the UK. I’m sure that your dad will be enjoying your presence and interacting in whatever way he can with his grandchildren. Love Lynne x

[John D]

It’s tough on the whole family J. I’ve had the reverse sadness on probably missing out seeing my 5 grandchildren 4-12 grow up and having lost my voice can no longer read to them etc. However, I’ve managed to learn to live with it, focus on the positives and as Lynne said, take each day as it comes. Children are very resilient and although they may not fully understand what’s happening they accept the situation and just get on with it. If you search the MNDA website you will find advice on how to explain to children. I do hope you can come to terms with your situation in time. All the very best.

[Mary C]

Hi John D ,
I am having a morning thinking about life without speech as mine is weakening now.This is brought on as have SALT team member coming later to sort out putting predictable App on my phone as currently just on my iPad.

I am not great on IT stuff so trying to sort out using predictable app.I know many people on the forum has lost ability to talk and wonder how the transition went for them???.I guess it can be lonely.
I think so far that will be my biggest loss as I am a chatter box by nature.It to me feels like a loss of personality, humour etc.
I did voice banking soon after diagnosis but the synthetic voice makes me sound like a robot...but better than no ability to communicate.
I usually don’t allow self pity but this morning I felt I needed to shed a few tears.
Got on line counselling session in an hour or so...again think that will have to cease soon once speech goes.

Any hints on learning to cope without speech welcome .
Best wishes
Mary

[LindaB]

Feeling your pain Mary C sounds like we're in the same place regarding loss of voice. It's wretched isn't it. I think we all need a few tears now and then...sorry I can't give advice Mary but am sending a virtual hug xx

[Ellie]

Apologies for duplication. Don’t know how it happened and can’t get rid of it!

John D Click the Edit button under the post, this gives you a Delete option. xx

[John D]

Aah. Thanks Ellie. Why didn’t I see that. Don’t answer that.

[Deb]

Hi J and a warm welcome to the forum from me,

I am so sorry for your dad's diagnosis... its such a shock for the whole family. We have our hopes and dreams for the future dashed. It is possible to make new hopes and dreams , however even if they have changed. I know its easier said than done but I find it helps to take one day at a time and not look too far ahead.

Its good your dad has such a loving family around him. It must have given him a boost to meet his grandchild. I hope he is getting support from MND health professionals too.

Take care of yourself,
Love Debbie x

[John D]

Mary/Linda - There’s no denying losing your voice and the spontaneity that goes with it is frustrating and dispiriting to say the least. I also used to enjoy talking/discussing and debating with family and friends. Now in a group I am usually 2 conversations behind. Not being able to answer phone calls is a big frustration for me.

I banked my voice with Acapela and use it on my iPad via the Predictable app (which isn’t as good at predicting as this forum!). It’s not too bad if not as good as I would like, hence ‘robot grandad’ to grandchildren. I don’t feel I’ve lost my personality. I am still me.

Having said all that, the way forward is to embrace the technology available. There are numerous Text to Speak (TTS) apps around, some free to use on laptops, iPads and phones. Boogie boards (etcha-sketch type writing tablets) are also really useful. I have also developed my own basic sign language although often misunderstood. The chat function on Zoom and the like is really useful.

I think it’s just as important other people know how to deal with it, eg be patient and wait till you’ve finished typing; don’t finish sentences; don’t read over your shoulder or upside down unless invited etc etc.

[EDIT] I feel fortunate to have met through the local MNDA Zoom call support group 3 others in the area who have lost their voice and we meet in person every month or so to share experiences and support.

Very best wishes. Hope this or some of it is helpful.

[Daught21]

Evening everyone,

I’m looking for some help! I’m in my 30s and have been living overseas for the past 18 months. I haven’t been able to come back to the UK until recently because the country I was residing in completely closed it’s borders, due to the pandemic. As soon as I returned, my dad (70s) was diagnosed with MND. His deterioration seems to have happened pretty rapidly. While overseas I had my second child, who is only now just meeting my family and friends, including my dad.
I am having a difficult time processing what has happened. My dad has gone from being a healthy, strong man, who was still working as an engineer, to someone who is unable to move unassisted. The whole experience is just complexity shocking to me; I can’t believe what has and is happening. I am in mourning for the grandad that my children have lost. Hopes of sleep overs at their grandparents house, holidays, day trips, fun filled christmases and birthdays have been completely decimated, and now I find my self having to explain to my 3 year old why his grandad can’t play and have fun with him and his little brother. I know that there are many people who have been struck by this horrendous disease a lot earlier than my dad, and I am more than grateful for the time I have had and the time that my children have with him now, but I can’t help feeling that I’ve been robbed of the next 10 years that I’d mapped out in my head. I’m not ready to lose him.
I guess I’m just looking for a little advice from others who have found themselves in this position.
Thanks,
J

Hi JWright11

Unfortunately I find myself in the same position as yourself. You're in the right place to get amazing replies from such wonderful people.

I am 39 and my Dad is 81. Who has also been a very strong character (nickname - the robot). My Dad was a builder until he retired when he was 68. I myself have seen a rapid decline in my Dad (since being diagnosed in June, with parkinsons also) Realising now that he had symptoms long ago and never told us - thinking he would get better 😪

I also believed my Dad would live alot longer (my grandparents were 94 & 96 respectively). I appreciate people are very young when they get this horrendous disease.

I've realised that I have anticipatory grief that I need to get help for.

I am praying a cure is found ASAP.

If you need to chat please reach out - DM me xx