Lost

[Graham]

I am someone with this awful disease and 'Is it Karma?' or 'Is it genetics?' is a relevant question. I believe the latter being agnostic.

Of course, I wish you well on this journey of ours but I have found certain people with certain beliefs are dead against us. When you liaise with government officials, some will be more helpful than others.

[miranda]

Welcome Jackie to our forum. It’s good that you have found us after what must have been like a never ending nightmare. We all have different ways of coping and there absolutely no way we can answer the “why me” question. Nor does there seem an explanation of what’s the cause. I’m a great believer in not spending mental energy on things we cannot change. Please don’t hesitate to ask questions, someone will know the answer.

[shrew]

hi Jackie, 11 and half months. Pm if you want. I will be happy to chat with you . I check in most days

[Hayls]

I’m a great believer in not spending mental energy on things we cannot change. Please don’t hesitate to ask questions, someone will know the answer.

Beautifully put Miranda

[Jackie]

Thank you so much Miranda for your very kind words . I do try and stay positive in front of ANDY and try and keep his spirits up but it’s hard sometimes.. he had a bad night last night and we were awake for most of it .. but on a better note , we got his bath chair the other day and he had a bath for the first time in a while . Don’t worry he wasn’t dirty he did have a strip wash at the sink lol .

[Jackie]

Thank you Graham and I am so sorry to hear that you are suffering from this awful disease, it’s not karma , i know this because ANDY has been nothing but a good man to everyone he meets , he is a loving father and grandfather and would do anything for anyone . And I won’t dwell on what other countries think about this disease.. that is their ignorance.. simple ... I wish you well and hope all your care needs are being met .

[Graham]

Thanks Jackie. There is a lot of ignorance about, even in this country.

There was a human genome project that I took part in. My father's side has been plagued by neuro pathology, although no one in recent generations with MND. The project revealed a 'spelling mistake' in gene DCTN1. This means the axons in the spine from the brain will lose function over time.

I think it's a good idea to get a gene test. It informs of prognosis and in time will lead to a cure. It also helps the children and grandchildren with the option of screening.

I also wish you and Andy well. It is always a battle to get care needs met, that is why I am developing a care app.

Graham

[Jackie]

Thanks Graham.. how do you go about telling your children they could have this Gene .. although our girls know a lot about it and already and know that it could be familial .. they have probably been thinking about it too .. at the moment they are to worried about their dad I think .. but I will broach the subject in time .
I’m sorry to hear your not getting all the care you need it’s difficult especially in these times .. I am off work so am here 24 /7 as are my girls , for ANDY . I hope things will improve for you now we are slowly coming out of lock down .

[Tess]

Welcome Jackie,
My partner has also been diagnosed this year at age 32. Coming to terms with it, im learning is definately not a linear process and the first time I've ever had to reach out to counselling in my life. The first line I told the counsellor 'i don't know how this goes'.
I would say me and my partner are on the 'same journey but on two different boats'. We'll never know exactly what they feel and are going through mentally and physically and vice versa they'll never know how it is to watch the person you love deteriorate over time and have to care for them and keep it together.
The 'why me/why us?' question we've had and if I've learnt anything so far from counselling, it's that there's no point to waste time or energy dwelling over what could've been (as if we all already haven't got enough on our plate, so a complete waste of time). Of course we have to look ahead sometimes to what we need to prep but the most important aspect of this is to live in the moment (super cheesy sentences coming out now). Really spend time with one another, laugh when you can, watch movies together and try to be present. (I'm not this deep all the time I promise but from going from 2 weeks straight in May where I couldn't control my emotions, I'm now at the stage where me and my partner are really living, laughing and enjoying each others company). Don't get me wrong I still have tender moments, like everyone, but it's an unfortunate journey that we roll our sleeves up and step up to the challenge as I know he would do the same for me with no questions asked.
Sometimes I do feel guilty getting upset about it as I know I'm not the one who has been diagnosed, but it is difficult being witness sometimes.
I can remember back to the first shoelace I was asked to tie for him and to this day that moment breaks my heart. But the emotion of it all gets exhausting and so to vent to someone and let it all out can be surprisingly theraputic. So definately recommend counselling if possible.
Here for you anytime.

Tess
X

[Ellie]

What a lovely post Tess. I totally agree that counselling can be a lifesaver.

I had 6 months soon after diagnosis and although I spent the first few sessions depleting the therapist's stock of tissues, I did eventually start talking It really, really helped me so, by default, it helped my family.

My husband refused to go but at least he did come with me to a family session with the kids.

Take care.

Love Ellie.

[Tess]

Hi Ellie,

Yes I know the feeling of uncontrollable tears, I've cried in the bank, I've cried in work, I've cried in the car, on the phone and reading some forum posts, but better out than held in.

That's nice that he could support by going to the family session.

It is fascinating how everyone deals differently with grief though, the denial, the anger, the upset in relation to the factors such as being male or female or even an introvert or extrovert in nature. I've noticed my partner keep it together on the most part, but then there has been times when I can tell he's down and goes quite quiet. Human beings are interesting creatures! (feeling a David Attenborough impression coming on)

Tess
x

[Ellie]

Yes Tess, better out than in, for sure, and I'm sure you provided some entertainment to some people in a boring queue in the bank

I always feel better after a good old sob - resets my emotions.

Never feel bad for being sad, angry, fearful etc - you've both been dealt a rotten hand in the prime of your lives, it hurts badly

Love Ellie.

[Piglet]

Hi Jackie
My husband was diagnosed in October 2017. He had symptoms of weakness in his arms from jan 2017 but in the June his breathing became a struggle really suddenly. One minute no problems the next minute I noticed him shoulder breathing. He was eventually given the breathing machine which has helped him have quality sleep since. He remains on this and has weakness in both hands and arms but is still eating independently albeit his food is cut up for him and intensional are padded for better grip. He is independent with walking. I wish you all the best to you and your husband