Overwhelmed Partner of MND sufferer

[Mole41]

Hi everyone,

my name is Louise and my lovely partner of 12 years was diagnosed aged 43 last year with MND after 2 and half years of thinking he had a trapped nerve in his neck! Shock is an understatement. Just feel so devastated and as if we have stepped in to some strange reality. We are both terrified for the future and have a limited support network which has been made even smaller during Covid. Not only am i trying to support him the best I can and work full time, but I know i will have to sell my house and myself and our boys will struggle so much when my partner is no longer here with us. I feel so terribly overwhelmed

I would love to hear from other MND carers and perhaps we can try and support one another.

Best wishes

Louise

[matthew55]

Hello Louise, I am a liver and you are the greatest support net anyone needs. The rest are support actors in this Rom,- Com, Horror, Adventure, and Thriller film 😉x

[Mole41]

A lot of the "support actors" disappeared, including sadly his own family. I'm hoping that they will come round eventually and that perhaps they are just scared and in shock too 🤷♀️

[Suefromwakey]

Hi Mole41 - if members of the family have vaped then they weren't worth having anyway...........43 is nothing of an age for your partner but having said that neither was 63 for my husband as all our retirement plans went out the window, this vile disease buggers up the carers life too and anticipated grief comes into it,

Wish you well

Sue

[Mole41]

Hi Sue,

so sorry to hear about your husband, so crushing to see your future plans just sail past isn't it. The anticipatory grief is a killer in itself. We have just started to have support from Neuro psychology so hoping they can help us come to terms with it all and live in the "now" again. I have begun to dread professionals coming to visit as all they talk of is is a negative, scary future that we just dont want to hear about. How long has your husband had his diagnosis?

[Ellie]

Welcome to the forum Louise, sorry about your partner's diagnosis.

Have you any idea which MND variant he has as that can make a big difference to you - is his progression 'slow', given the diagnosis took 2.5 years? Although the term 'slow' is relative, no matter how slow, it's always much to fast 😪

Love to you all,
Ellie x.

[Suefromwakey]

Only diagnosed this Feb..........started late 2016......under consultants from 2019..............painstaking

[Mole41]

Ellie all we know is that it is "sporadic" ? It started in his right arm twitching with neck pain and he was told he had a trapped nerve, then military neck and various other things. The progression had been slow up until the last 4 months. He was able to walk 5 miles, speech was fine, driving and working up until December. January came and things declined quickly. Speech now impacted, right arm gone, left arm hand going, walking is slowly deteriorating and no longer able to work or drive. Such a cruel disease. He is the kindest person anyone could with to meet, that I find so hard to cope with 😫😪

[Mole41]

@suefromwakey

what did you or professionals think your husband had before this diagnosis?

[Ellie]

Mole41 It sounds like ALS. I was diagnosed in 2007 and was far more progressed than your partner after 2.5+ years Louise, so never give up hope when you read of 'typical survival rates'. x

[Mole41]

Yes, sporadic ALS. What have you found helpful, if anything? X

[Ellie]

I know it sounds mundane and basic Louise, but I do my best to keep healthy, positive and happy. By healthy, I mean I avoid people with coughs & colds, didn't lose weight, keep very well hydrated and also I got a feeding tube just before needed.

I was 38 when diagnosed, with 2 young kids, and had to be happy and positive for them, I couldn't feel sorry for myself as I had no time!

We are all different and there is no doubt I've been very lucky, but having a good attitude towards life, challenges and all, really can make a difference - though this is definitely not always easy. xx

[Mole41]

Ellie you are an inspiration I wish you well with your fight in the disease. We do try to stay as positive as possible, but like you say there are times when that isn't always easy. Love to you and your family x

[Gordan1111]

Hello Mole. There's different types often delineated by area of original onset. It may seem a warped way of looking at but I think also outlook comparatively improved by a younger age at onset - ie such as your husband's age. x

[Banned]

I was 43 when I first noticed something was not quite right. Now 59. I was told that I would die. Never happened. There are a few treatments on the way in the USA. Never give in!

I am alone, siblings ran for the hills years ago and no other family. I work tirelessly on my care app. Nowadays we have the technology, we just have to adapt to survive.