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Gemsi
31st December 2012, 14:00
Hi guys im new to this forum business so bare with me, recently my dad has been told he might have MND and was going to get more tests done as hes got all the symptoms but now he has decided he doesnt want to know. Stupid i know! Hes almost off his feet, losing musle and appitie, hes 70 and always been active until he started having bad hips, and now this i would love to hear your thoughts cause im really scared of losing him x

Terry
31st December 2012, 14:42
Hi Gemsi;
I think that he should find out because if it is not he might be able to be treated. Also knowing what it is helps with getting assistance from various people when it is needed. Some of the tests are not nice and I can understand his reluctance in finding out what he has. Many people choose to ignore it in the beginning.
All the best, love Terry

Arthur
31st December 2012, 15:31
My personal opinion is that you need a diagnosis, after all it may not be MND. I knew that MND was one possibility for me but I did not research MND until after the diagnosis, then I faced it. Maybe your dad is doing something similar.

Gemsi
31st December 2012, 16:29
Hi Gemsi;
I think that he should find out because if it is not he might be able to be treated. Also knowing what it is helps with getting assistance from various people when it is needed. Some of the tests are not nice and I can understand his reluctance in finding out what he has. Many people choose to ignore it in the beginning.
All the best, love Terry


Thanks terry, its like he's giving up. The more we try to encourage him to seek help the more he pushes us away, we struggled to get him to have a blood test so not looking good regarding other tests, but how do u cope and does anyone what stage hes at if it is this?

Rory
31st December 2012, 20:51
Hi Gemsi
Terry is right - as soon as you have the diagnosis, you can obtain the right help around you and in my opinion ( I have bulbar Palsey) you can then plan your life ahead and take each day as it comes. Prepare for the worse but hope for the best.
Rory

Terry
1st January 2013, 21:01
Hi Gemsi;
Sorry to hear of your dads problems with coming to terms with this. I think that we cope by taking each day at a time. I try to look after myself in order that my quality of life will be better for longer. If a miracle drug does come along I will be in the best state to receive it. I still enjoy helping people at the hospice and elsewhere. Any normal person can rapidly go downhill by not eating and being depressed. It is very important that he gets the nutrition that he needs.
As for what stage he is, well that’s hard to say. A lot depends on when the systems first started and the rate of progression since. It is quite individual, as Mnd shows itself in many different ways and at different speeds.
You can only try to encourage him, he might come around with a bit more time.
Good luck, Love Terry

Gemsi
3rd January 2013, 16:12
Hi Gemsi;
Sorry to hear of your dads problems with coming to terms with this. I think that we cope by taking each day at a time. I try to look after myself in order that my quality of life will be better for longer. If a miracle drug does come along I will be in the best state to receive it. I still enjoy helping people at the hospice and elsewhere. Any normal person can rapidly go downhill by not eating and being depressed. It is very important that he gets the nutrition that he needs.
As for what stage he is, well thatís hard to say. A lot depends on when the systems first started and the rate of progression since. It is quite individual, as Mnd shows itself in many different ways and at different speeds.
You can only try to encourage him, he might come around with a bit more time.
Good luck, Love Terry


Thank u terry for taking you time to reply, he's been very active through the years with work and we all noticed him having trouble with his hips, this was about 10yr ago so i dont know if it was this or it was hip deteration, but the last couple of years its got worse but now a few weeks ago he had a fall and since then he's pretty much been off his feet and been getting thinner. I just dont know what to do to help him or what to expect.

roy
3rd January 2013, 16:22
HI Gemsi,
sorry you have found yourself on here,as you have found there are some great people who you can take help and support I also found on the main site the MNDA a great help for both practicle, financial and medical advice during office hours.you will find the telephone number on the main site.

best wishes.

Roy.

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