Struggling mentally after diagnosis

[Patw]

I feel for you Pat, especially at your age and your childrens ages. My children were in their 20s when I told them, but my wife is taking it the worst.
I accept what I have, and it does not upset me anymore , what upsets me is talking about it to relatives, as I hate seeing them upset.

I have been amazed at what help has been available for me and my wife, and we have tried to make the best of what is being offered .

thanks mate
I accept what I have , my partner has been amazing coping with it but I’m still able to do everything so until she sees the changes I don’t know how she will cope then ,,
it’s my kids that are ripping my heart out my 10 ur old just got upset saying how he loved playing football with me but now he can’t as my legs are weak 😢😢

[Patw]

Hi Pat and a warm welcome to the forum.

I wish I could give you a big hug... im so sorry for your diagnosis. Its such a shock and it takes a long time to come to terms with. I sometimes think the mental demons are as bad as the physical ones. Well done for reaching out and accepting counselling... I really hope it helps you.

Its really good advice to take one day at a time but its easier said than done. We all want to look ahead and have hopes and dreams for the future. However noone in life knows what tomorrow will bring so really we should all be living for today.

I am sorry you're finding it hard to eat and I appreciate that the more you know you should maintain your weight the harder it is. If I am feeling low or having an off day I really don't want to eat... I have little and often snacks and milky drinks.

Love and hugs to you,
Debbie x

Thank you deb it means so much xx
i will do this xx we will do this xx

[Patw]

Nothing will stop the pain Pat - you have been dealt a rotten hand in life - but the meds and counselling are 2 tools to help you to rationalise that heartache and to help you cope better with your day-to-day life, as well as to help you be a daddy to your kids and be a partner for the good lady.

It's as hard as hell but you'll get there, so accept all the love and help on offer. You will live, love and laugh again. 💜

Thanks so much
that’s the one thing this rotten disease can’t take is the love I have for everyone in my life xxx
i will live and laugh very soon
big hugs x

[Patw]

Hi Patw
I guess you are in shock and grieving for anticipated losses.I too felt shocked but like many others settled with time into the diagnosis and looked at my support network.I find , hubby, family, friends are a great support to me.Along with this the hospice palliative care team have reassured me of their support as things change.Not sure if hospices will reopen their services such as offering people a day to go in for various therapies and support to you and your partner.

Added to this I also have zoom sessions with a psychologist arranged via hospice team.
Overlaying the support I get I am a committed Christian so get support from my faith.
With this support I gradually was able to not let the MND overwhelm me as I have a goal like others to make the best of each day. Of course there are times when I feel tearful or fear creeps in.

I also find this forum offers support which I value plus I do a zoom support group with other Warwickshire people living with MND.
I too have lost weight so trying to eat more as struggling with the supplements( I have tried quite a few).My appetite has diminished recently after almost a year since diagnosis.
I can relate to you feeling overwhelmed and give yourself time and be open with your counsellor.
In the first few months I focussed on what I could do practically to distract myself.(sorting benefits, getting blue badge etc
You just have to go at your own pace and explore what help might be useful to you both and your family.
Best wishes
Mary

Thanks Mary
big hugs to u x

[SueM]

Hi Pat, I’m sorry you find yourself here. I was diagnosed last September, what a devastating diagnosis. I have been seeing a Clinical Psychologist, the therapy I’m having is called Acceptance and Commitment therapy,didn’t think I was the therapy type but it has been really helpful

[Patw]

Hi Pat, I’m sorry you find yourself here. I was diagnosed last September, what a devastating diagnosis. I have been seeing a Clinical Psychologist, the therapy I’m having is called Acceptance and Commitment therapy,didn’t think I was the therapy type but it has been really helpful

I’m glad it helps u xx I’m praying it is of help to me ! I know what I need to do just can’t execute it at the minute xx

[Jo jo]

Me and my partner cried for weeks when he was diagnosed and never thought we would stop. Every time we woke in the morning was the worst as you are still in that dreadful nightmare called MND.
life does become easier and you will as the friends on here have said , take one day at a time.
You have definitely come to the right place, being on this forum. Everyone is so nice and no question is a silly question.
Take care and I hope your appointment goes well xx

[Patw]

Me and my partner cried for weeks when he was diagnosed and never thought we would stop. Every time we woke in the morning was the worst as you are still in that dreadful nightmare called MND.
life does become easier and you will as the friends on here have said , take one day at a time.
You have definitely come to the right place, being on this forum. Everyone is so nice and no question is a silly question.
Take care and I hope your appointment goes well xx

Hi jo jo
yes everyone on here have been lovely so glad I started talking about it aswell
thanks so much and take care also x

[richard]

Hi Patw Everyone has I hope given you some reassuring advice in so much as you are not alone and many if not all of us have been there. One thing I frequently say is to take time with your partner and family to remember lots of the fun times and have a good laugh, it's a great medicine. Crying and being depressed is also natural and a way of releiveing things but I hate to say it, its not helpful.

As the days and weeks go by I believe you will mentally feel stronger as you come to accept this horrible illness. Take care my friend and keep smiling.

Richard

[Patw]

Hi Patw Everyone has I hope given you some reassuring advice in so much as you are not alone and many if not all of us have been there. One thing I frequently say is to take time with your partner and family to remember lots of the fun times and have a good laugh, it's a great medicine. Crying and being depressed is also natural and a way of releiveing things but I hate to say it, its not helpful.

As the days and weeks go by I believe you will mentally feel stronger as you come to accept this horrible illness. Take care my friend and keep smiling.

Richard

Thanks Richard
I will get there one day at a time 👍

[Boiler68]

Hello Patw....I haven't actually posted in a long time but your situation resonates with me in that my husband was diagnosed when our 4 children were young. He was 50 at the time and our youngest was 6. That was 13 years ago. I know that we can't predict the future and everyone's journey with MND is different but he has survived longer than we thought he would after he was told to get his affairs in order at diagnosis. He's had a slow journey but we had no way of knowing that at the time and for the first year (maybe a bit longer) it was dreadful. I too, couldn't pick myself up. He was the stronger. I was constantly in tears, worrying about him, our girls, my job, finances etc. I went to counselling organised through my workplace and it definitely helped me. So I would advocate for counselling - I truly hope it helps you. And I suppose I want to say to you to not waste any time doing what I did. I know you need a bit of time to adjust to this diagnosis but try to make the most of every day, making lovely memories with your family. If you can't do it for yourself, make yourself do it for your children. We have seen milestone birthdays, graduations, a grandchild and all the things we thought we wouldn't. I know we have been lucky in that respect and not everyone gets that time; I'm not saying it's been a bed of roses because it's been hell at times but I hope that this post has given you a bit of hope and that's what's seen us through. Best wishes to you.

Boiler xx

[matthew55]

In three weeks got there in the end

[Patw]

Hello Patw....I haven't actually posted in a long time but your situation resonates with me in that my husband was diagnosed when our 4 children were young. He was 50 at the time and our youngest was 6. That was 13 years ago. I know that we can't predict the future and everyone's journey with MND is different but he has survived longer than we thought he would after he was told to get his affairs in order at diagnosis. He's had a slow journey but we had no way of knowing that at the time and for the first year (maybe a bit longer) it was dreadful. I too, couldn't pick myself up. He was the stronger. I was constantly in tears, worrying about him, our girls, my job, finances etc. I went to counselling organised through my workplace and it definitely helped me. So I would advocate for counselling - I truly hope it helps you. And I suppose I want to say to you to not waste any time doing what I did. I know you need a bit of time to adjust to this diagnosis but try to make the most of every day, making lovely memories with your family. If you can't do it for yourself, make yourself do it for your children. We have seen milestone birthdays, graduations, a grandchild and all the things we thought we wouldn't. I know we have been lucky in that respect and not everyone gets that time; I'm not saying it's been a bed of roses because it's been hell at times but I hope that this post has given you a bit of hope and that's what's seen us through. Best wishes to you.

Boiler xx

thanks boiler yes it has helped !!!
saw the psychologist yesterday and I knew everything he was gonna say tbh , but since then I have not cried and even my partner has said today how I am smiling with my eyes again , so long may that continue just taking day at a time now

[Ellie]

Patw I am so glad it went well with the Psychologist, Pat - it's good to talk. And your partner noticed your lighter mood, woohoo!!

Have you future appointments? Hopefully you have.

Onward & upward, gentle steps and remember, you're not alone.

Love Ellie.

[Patw]

Patw I am so glad it went well with the Psychologist, Pat - it's good to talk. And your partner noticed your lighter mood, woohoo!!

Have you future appointments? Hopefully you have.

Onward & upward, gentle steps and remember, you're not alone.

Love Ellie.

Thanks Ellie
im not sure if it was him or all the great messages from all the great people on here, but last night I felt so fresh and a sense of release, even my daughter said I got my dad back and today I haven’t shed a tear ,, so I hope it continues and thanks so much for your kind responses xx