Motor neurone disease

Pages

My husband was diagnosed with motor neurone disease in March his hands and walking have got much worse he can’t walk without a walker can’t dress himself his hands don’t work properly anymore he 54 it’s heart wrenching watching this happen to him I’m a mess I’m having bad anxiety And I feel I’m not coping very well at all

Helly...
....I have an autoimmune disease, I have MS, I was diagnosed age 64 four years ago, same date 11 th April I lost my partner Richard, he died at home in his armchair 11 th April, yes just 12 weeks ago now...My Richard was the one who looked after me, he looked after me financially and drove me anywhere I needed to go, now he is gone, the car was taken back, our dog - his dog has been re-homed not far from where I am, he is in a larger home with garden and another dog, he is doing well, cant say the same for me...Any of our illnesses that attack the nervous system, the spinal cord are horrible to deal with, whether one is the sufferer or one is the partner...

Helly, just be there for him, your hubby, he needs you more than ever now...Do you have children? if so they need to know how his will affect their father if they do not already know...

Sending (((hugs))) to you and your hubby...Just remember we still have a life, only our life as we once knew it, will not be the same life we once had...it is only our body which has changed, underneath we are still the same loving person...

Jackie...

In reply to helly

I too saw my husband deteriorate, COPD On Oxygen 24/7 couldn't walk far, got out of breath really quickly, had a walker too, a fit man 2 years earlier, I used to have to dress him, see to his personal needs, yes it's heartbreaking, but keep up beat about it, my husband always wanted to look his best and I made sure he did. See it from their point of view, they now have to rely on you, and they are totally devastated it's happening. My life was centred around his needs, sadly my husband passed away 11 weeks ago, and I'm lost completely, your husband needs you, just continue with your life as best you can, talk to each other, your love for each other will see you through.

Thank u hun we are both struggling with the situation at the moment and last night I couldn’t sleep and was think think think X

Hi hun sorry about your hubby and sorry u are poorly to I’ve got to have mri seeing a neurologist as have had weak leg arm in and off now been getting pins and needle so hoping I’m ok as thts all the girls need both of us ill I wondered if stress could cause it stress is a funny thing . It’s horrible grief isn’t it I lost my dad two years ago I know what it’s like felt like I was beginning to move in a bit then hubby was diagnosed life can be bloody hard at times can’t it x

I think I replied to the wrong person with last message sorry lol my brains all over x

In reply to helly

Hi I am so sorry to learn of your husband being diagnosed with MND it’s a cruel illness and as hard for the husband/wife watching the effects on their loved one as it is for the patient.. I can tell you that it is natural to feel you are not coping when you certainly are but not realising it. My husband sadly passed away from MND in December last year and all we could do was make the most of every day whatever it brought, we tried to love and laugh as much as we could and found new ways to get around the problems as they arise. Don’t beat yourself up just do all that you can to help him and be confident that you are a rock to him and without you he wouldn’t cope.

If I can be of any help in any way please get in touch.

Love to you both

C xx

Sorry for your loss it’s really hard to watch isn’t it my hubby has been getting very frustrated and he shouting a lot and getting angry thts hard to cope with is this normal ? X

In reply to helly

Hi thank you. Yes it’s the hardest thing I have ever done watching my husband deteriorate over five years. Gethin never shouted but he bottled up his thoughts and worries and somehow the man I knew wasn’t there anymore and he was so frustrated as the mind was perfect but the body let him down. We have to remember the sufferer always vents the anger on the nearest and dearest please try not to take his moods personally, the fear of knowing how this horrid disease affects the body must be so dreadful for your hubby just give him all the love you can and remember we are only human and we do the best we can. Speak soon I hope. Xx

In reply to helly

Hi thank you. Yes it’s the hardest thing I have ever done watching my husband deteriorate over five years. Gethin never shouted but he bottled up his thoughts and worries and somehow the man I knew wasn’t there anymore and he was so frustrated as the mind was perfect but the body let him down. We have to remember the sufferer always vents the anger on the nearest and dearest please try not to take his moods personally, the fear of knowing how this horrid disease affects the body must be so dreadful for your hubby just give him all the love you can and remember we are only human and we do the best we can. Speak soon I hope. Xx

Pages

Category: