How many people

[Suefromwakey]

on here have actually met someone else with MND?

I ask because my husband is adamant he doesn't want to meet anyone with it and doesn't want to go to any kind of meeting where other MND sufferers are likely to be..................he doesn't want to see how hes going to end up if there are people worse than him,

All he's ever seen are the publicity shots of other sufferers,

So would he be better not meeting anyone else or have any of you found that it helped meeting folks with this god awful disease?

Thanks

Sue

[Ellie]

...............he doesn't want to see how hes going to end up if there are people worse than him,

I totally understand where Albert is coming from, Sue. I will always remember sitting in the waiting area of my MND Clinic, in the early stages of ALS, and staring into my future - it was cruel and horrifying, no matter how they tried to stagger appointments, there was always a mix of progression stages in the room.

If Albert would rather stay in blissful ignorance, and I use that term with sincerity, that's OK and, probably more than OK as he has a slow form of MND.

But things change, and I have met others with MND in the hospice and in my house, their carers too, sometimes on their own, and they all said it was helpful (maybe they were just being polite...)

As with other aspects of coping with MND, there is no right way nor wrong way, only whatever way people choose.

Love Ellie.

[Positive vibes]

on here have actually met someone else with MND?

I ask because my husband is adamant he doesn't want to meet anyone with it and doesn't want to go to any kind of meeting where other MND sufferers are likely to be..................he doesn't want to see how hes going to end up if there are people worse than him,

All he's ever seen are the publicity shots of other sufferers,

So would he be better not meeting anyone else or have any of you found that it helped meeting folks with this god awful disease?

Thanks

Sue

Hi Suefromwakey

I haven't - but, my Dad, just diagnosed has. He went to LOROS last Friday and met a chap with similar diagnosis and similar age, who is a bit further progressed than Dad is. Whereas Dad can eat (almost) normal food at the moment, his new friend has to have food as a mash or smoothie type texture. The prospect of meeting someone worse off/further down the line didn't put Dad off, he wanted to talk to someone else with a similar diagnosis as only they would have a inkling of what this means or feels like physically and emotionally.

I don't know what they discussed, I only know, whatever was said, Dad is more positive, and is accepting (and asking) for adaptations and help, which he refused before seeing this other gentleman. So, it was a positive experience for him all round (with a knock on effect of more positivity for us) - as well as all the help the hospice offered.

We are all different though. What works for Dad may not for your husband, but, sadly, your husband won't know if it will be beneficial for him if he doesn't want to go.... I guess all I can say is, ask your husband to read this post and ponder a little more on what benefits he may actually get from similar folks with similar diagnosis? And just because they display certain symptoms, doesn't necessarily mean your husband will have identical ones or progress the same way, from all I have read on here so far....

Hope that helps you both....

[Deb]

Hi Sue,

I guess we are all different and we cope in different ways. A few years ago I met up with a lady I had met through this forum and we had a lovely chat and a glass or two of wine. Our husbands had a pint and talked about football, cricket etc ... anything but the one thing they really had in common. Stuart is brilliant at practical help... nothing is too much trouble but he has never been one to talk about his feelings.

I find being in contact with others through the forum really helpful. I know there are people who understand emotionally and practically and I am inspired to think positively ( on a good day !) but this might not be for Albert.

Like Ellie, I found my first visit to clinic very upsetting. I had been warned but to see people at different stages was difficult. The clinic at Seacroft is organised differently now due to covid but I did get used to it and it was good to make contact with others.

Love Debbie x

[matthew55]

I was diagnosed with Bulbar Onset almost a year ago and I lost ability to eat in 7 months and I have to confess that I miss eating more than sex. 😁😛x

[Mary C]

Hi Suefromwakey
I understand what your husband is saying.My first out patients appointment was difficult for my daughter who accompanied me seeing others in more advanced stages.
I myself really wanted to talk to other people living with MND .
I do a monthly zoom support meeting with local people with MND...it’s not easy as I see their changes as they see mine.On a positive we share ideas , have guest speakers and try and support each other in many ways.

I did befriend a person who was on this forum and we did zoom together.It was great to laugh and share ideas etc.We were diagnosed at the same time last year.She died and I was very shocked and sad.Shocked because she went down breathing wise very quickly ..it really did upset me more than I thought it would have.

So it’s a personal thing for your husband to decide and there are pros and cons.He can always change his mind and soon maybe hospices will resume day hospital.The MND association facilitate local zoom support groups .
So yes I have met two people so far with MND at out patients clinic( one of which I knew as he goes on the zoom support group)
You will find everyone on here will have their own perspectives about this but hopefully your husband will do it his way.
Best wishes
Mary

[Olivia H]

I've never wanted to, I don't really know why...my mum had cancer, and found it useful to chat to other sufferers early on, when there were treatments pending and hope, but as things got worse, the last thing she wanted was to see other people very ill, or indeed those who were getting better when she got worse. Perhaps this is the same. It's easier to have camaradie here as we are all equal.
Interestingly, a work friend of my husband was diagnosed with this a few years ago and asked to meet me, which we have done a few times...I can barely walk, but can talk, eat, breath, use my hands no problem, .he cannot talk or eat or breath great at night, but can walk and drive, so we sort of compliment eachother! I firmly believe in getting the better if this condition, in whatever way you can.

[Graham]

Well I guess there ain't much chance he will be meeting me...

https://www.youtube.com/watch?v=6zkL91LzCMc

I have only been out once in 7 years!

[denise]

I worked at a centre for people with learning difficulties and physical disabilities. Not sure what term I'm supposed to use! Some enjoyed getting together, talking and just sharing. Others just complained about everything so I think it would be dependent on those attending.

thinking about it my mother didn't want to end up living with a lot of old people.

I guess it's what we all want and need out of life. Some benefit from company some keep themselves to themselves.

[denise]

When Stephen was having his peg fitted he made a friend with a man who couldn't speak English and he can't speak Portuguese. They had a great time. He just enjoyed this man's company. They were like two kids. It really lifted his spirits. I wish they could meet again.

[Shaun]

Hi,
I’m friends with one other , connected through local mnda, we’ve met up a couple of times when covid has allowed and we what’s app daily - keeping it light, mainly jokes and the occasional moan. We did have a third member, but he passed away a couple of months ago, which was strange because it was sad, but we knew it was going to happen and it was just accepted. Personally I have found it quite nice to have someone else to chat and meet, where the disability is normal and don’t feel have to make excuses, also he is a lot further along than me, so he can give good local tips
s

[SueM]

When I was a District Nurse I came into contact with several people with MND. One in particular I was more responsible for, he was in his forties and had a difficult time coming to terms with his condition. When I was diagnosed I was beside myself, partly because I had this insight into how things may go. I can quite understand Sue why your husband may not want to meet others with MND.