No announcement yet.

MND Conference - Should my parents go?

  • Filter
  • Time
  • Show
Clear All
new posts

    MND Conference - Should my parents go?

    Hi my Dad was diagnosed with MND a couple of months ago but is still very active and unaffected physically. He has lost some of the use of his left arm and hand but can still drive etc. He is very keen to go to the MND conference at the weekend but I'm worried it will really upset my mum who is already very scared about the road ahead (she isn't keen on going). Does anyone have any experience of the conference and will they be confronted with the stark reality of life near the end of the line etc or do you think it will provide some reassurance? Me and my dad prefer to read up and know what we are facing but my mum and sister are the opposite and up until now I haven't told them much about life further down the road and have made out we have plenty of time (Which of course we don't know how quickly things will progress).

    Any advice would be welcome, I live 4 hours from my parents at the moment but I could catch the train and offer to go with my dad instead if it will be too much for my mum. They are incredibly close so I guess it would be better for them to go together if it will be helpful.

    Thank you

    Hi Mydad and welcome to the forum;

    It sounds like your dad must go. There will probably be a couple of people further down the line than your dad but every one is very friendly. Register on line and ring Mnda connect if you have any problems.

    It would be good if you and your mum could go as it is good to get her involved with things, and to smell the coffee so to speak.

    Please feel free to ask any questions and get your dad on the forum too.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.


      Hi my dad,, one thing i would say is if your mum and sister arnt keen on going then go with your dad. As I was in the same situation with dad and it ended up me going to all his appts as no one else could handle going,, and the mnd nurse said to me that you have to bear in mind that there may be others that will be further on than dad and is that someone they would want to see (as in could hey handle that),, so my advice would be for you to go with your dad amd your mum and sister may come round to the idea over time and they could maybe go the next time.... Katrina x


        Hi mydad,

        I have been to a few of these meetings and I was scared first time as there were people in wheelchairs and using breathing apparatus. I am fortunate in that my MND is slow but the inevitability is that at some point we will all experience this to one degree or another. These meetings offer advice, information and reassurance because nobody judges you. The speakers are experts in their field and this year we have dame professor Pamela Shaw who is world renowned as one of the best in Neuroscience.

        The questions and answers sessions are very good and meeting patients and their carers/family in similar situations is rewarding. If your mum doesn't feel up to it (and to be honest my wife doesn't go) then go with your dad. I will be there so come and introduce yourselves.

        Best wishes,
        I’m going to do this even if it kills me!


          Hi mydad. I agree with everything that Barry says. Please take your dad if possible, I am sure you will find it worthwhile. We went for the first time last year and will be there again this weekend.


            Thank you everyone that's very helpful, I will talk to my mum & Dad and suggest I go with him this time. It's such early days and we are all still coming to terms with the news so I think it would be too much for my mum right now. I will see what they both think!



              Thank you everyone for your replies on this thread it is great to hear everyone's personal experiences of going to our conferences and support groups and I am glad to hear that these have been helpful MyDad.

              At our AGM there will be people at all different stages of their MND which can be upsetting especially when newly diagnosed. However, like Terry said everyone is very friendly and supportive and sometimes it can be a really positive thing to meet other people with the diagnosis, their families and carers.

              If at any point if any of the information given is too overwhelming then please know that two members of MND Connect, myself and my colleague Rachel will also be at the conference if you would like to talk to somebody. There will be a quiet area that people can use if they need to.

              Also, if you as a family do decide not to attend the conference then please know that we will be live streaming the day so you will still be able to watch all of the presentations at home. The link to this will be posted on the forum on Saturday morning.

              If you do have any concerns please do not hesitate to contact us either via the forum, by email on [email protected] or by telephone on 0808 802 6262.

              We look forward to meeting everyone that is attending on Saturday.

              Best Wishes,

              MND Connect
              Contact us on 0808 802 6262 or at [email protected]