Father diagnosed and genetics

[Terry]

Hi Barbara and welcome to the forum;

Sorry to hear about your dad and his seemingly fairly fast progression.

I don't think the accident would make Mnd speed up but it certainly doesn't make anything easier.

I do wonder what professional advise and support his getting to make things better for him and enable dad to get out especially now the weather is warming up.

If his needs are great, dad might just qualify for CHC (continuing heath care) and this should be free.

As for progression, people have different types that affect different areas to start with. It would appear that he has little body rigidity and bad legs but is his talking, breathing and swallowing OKish?

Best wishes, Terry

[Lynne K]

Hi Barbara. I'm sorry about your dad's decline and especially that he hasn't been outside since November. Depression is a risk in such situations. I hope that you can get him out soon. I don't know which country you are in but saying that this is 'expensive' suggests that you aren't in the UK. But I'm no expert.

Take care. I send love to you and your dad, Lynne x

[Barbara236]

Hi Lynne and Terry,

Thank you very much for your kind words and support, all the best to you too!

Yes, unfortunately, my family lives outside the UK where the social system is really messed up. They don't have much experience with MND and it is very difficult to get any kind of support.

We finally managed to get 12-hour care approved, however, we struggle to find anyone suitable as carers are not provided by country, we have to find them ourselves (not talking about need for someone strong and dedicated enough).

My father got his special bed approved which, according to our country laws, means that he cannot walk or move anymore so he had his walking frame and wheelchair taken from him. Plus, if they were to approve longer care or other special equipment, they would stop prescribing Rilutek as, as they say, it means his condition is really bad and cannot be saved (as I said, they have very limited experience with MND and compare it to other diseases).

We had to get a quote for a hoist from a private company and it costs around £8,000. I said I'll contribute and I am more than happy to do a fundraiser but my dad doesn't want people (apart form the closest friends and family) to know so I would feel really bad going behind his back.

I travel home every 3-weeks for a week or so and will try to do it more often, I am considering moving home and quitting my job everyday, but my mum doesn't want me to as she understands reasons why I moved to the UK (support system, better work, chance to support them and that my dad has something to look forward to every time I come home - he is literally counting down days every time he wakes up and his mood his completely different when I come home). I know it might seem selfish to someone to leave all the hard work up to my mum and sister (who moved in with her husband), I feel this way quite often, but maybe someone has similar experience living far from their family and know how to make a decision?

He is ok eating and breathing for now, however, I can hear that it's getting difficult for him to talk. I always take him out, at least to our garden and around the house where he plans different projects (disabled entrance, winter terrace so he can see outside etc.) but he refuses to go any further, to go and get some fresh mountain air or visit a family - as he doesn't want people to see him (too proud) and would feel even worse being outside and not being able to walk (he's been active his entire life).

Any advise on how to deal with this?

Thank you very much.

Barbara

[Lynne K]

Oh Barbara. Having his wheelchair taken away is awful. Why get a hoist then if no wheelchair to hoist him from the bed into. Or, is the hoist just to assist getting him out of the way for bedding changes? Some people spend most of their day in a MND suitable wheelchair and are hoisted to bed or to the toilet. That enables those people to have a change of scene even if they don't go out of the house. But remember Professor Stephen Hawking. He could only move one muscle in his cheek but he got about in a wheelchair with lots of help. He had an NHS type bed at home and hoists. I'm not saying that your dad has the means (seeing as the cost of the help that Stephen Hawking had was enormous) or the desire to be seen in public. But some fresh air is a must for us all up until absolutely the last days. Can your dad get his wheelchair back when you've managed to source a hoist? Lynne x

[nunhead_man]

Good morning Tecwyn

And sorry Barbara am also sad to hear about your dad and hope matters improve

Neuro just reassured that it was not familial MND

Tecwyn, was this reassurance as a result of a genetic test, do you know?

Warmly

Andy

[Barbara236]

Thank you Lynne,
My mum was trying to negotiate with doctors and managed to get an older, used wheelchair so at least this. And, as you say, he might need a better one anyway in the future so I hope we can get this, I will try to make sure that people who make decisions understand our need for it. But we still have to pay for the hoist as our country simply doesn't pay for these things...
We are trying to get our day out of the house so we'll see, he was even talking about a hoist and special seat in the car so I hope this means he will finally agree to go somewhere.
Best of luck to you, Lynne and thank you for the support! xx