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  • Barbara236
    replied
    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

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  • nunhead_man
    replied
    Good morning Tecwyn

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

    Originally posted by Tecwyn View Post
    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

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  • Lynne K
    replied
    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

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  • Barbara236
    replied
    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

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  • Lynne K
    replied
    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

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  • Terry
    replied
    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

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  • Barbara236
    replied
    Hi Tecwyn,

    I'm very sorry to hear about your father, stay strong and keep showing your love! I can honestly say that only now I understand words of 'I know what you're going through' and their real meaning. My love goes to you and your family.

    My dad, 54, has been diagnosed with MND last summer and it's been such a huge shock for our family that I didn't really take it seriously for a few months. We've been skiing together last spring and it's been impossible for be to understand what's going on and what's going to happen next when I heard the news.

    Since end of the summer, it has been getting worse very fast, week after week. He would start using one, then two crotches, switching to a walking cart and he hasn't left the house since November last year. Now, he can stand up and down with our help and turn around if needed but he is mostly on the wheelchair, finding it difficult to keep a stability even when sitting. We are now trying to arrange a full-time carer and hoist, however, it is very difficult and expensive.

    My question is, does anyone have a similar experience with this progress' speed and do you know what to expect? (is it going to get worse so fast or does it stay in certain stage for longer time? or is it very individual?)

    Also, his symptoms started to show (by knee/tight pain and tripping once in a while) after our ski trip in March when he has been hit by another skier and fell down on the hill. Could this effect the speed of the illness?

    Thank you all very much for your help, only reading all the words of support on this forum helps us a lot, knowing there are many people affected worldwide.

    Barbara

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  • Tecwyn
    replied
    Thank you Ellie for your reply, I think I could well be suffering from a spot of anxiety. Dr just said to go back if muscle pains continue and Neuro just reassured that it was not familial MND but not sure how reliable that is and probably what is contributing to some anxiety, great idea to talk to the hospice of which I will do. Getting a lot of strange sensations and constant twitching in left leg so may need to get a further doctors appointment too.

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  • Ellie
    replied
    Hi Tecwyn,

    I'm sorry you're so anxious atm but, no, you're not describing MND symptoms at all. You have no clinical weakness and twitches in themselves mean nothing (and are made worse by anxiety)

    Did the GP say if you were to have any follow ups?

    I reread all of your posts and I think it's fair to say there's a hint of anxiety running through your posts which must make you fear the worst - it can't be easy for you living with these worries.

    It'd be great if you could discuss your fears with someone - can you access counselling at your dad's hospice? Did you get to chat with your dad's Neurologist at one of his Clinic visits?

    Love Ellie.

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  • Tecwyn
    replied
    Hi all, hope everyone here is keeping well and maintaining a positive attitude. My dad is currently declining but thankfully at what appears to be a slow pace, still walking, talking and eating but all at a very weak and reduced rate.

    I am after some advice if possible please, over these last 5 months I have developed a lot of tightening in shoulders and arms with some accompanying pain and occasional twitching. I also have a buzzing feeling and twitching constantly in left leg and again tightening in thigh muscle with some pain. I also have IMO some wasting in the muscle between thumb and finger and have some perceived awkwardness when performing intricate tasks with hands. I have no weakness but have a general feeling of weakness when walking stairs or lifting but able to lift quite heavy objects but then will get some pain and twitching.

    I have been to my GP who performed blood tests for everything imaginable and I have seen physio who performed strength tests and physical examination. No cause for concern was the response to both. I don't really recognise my symptoms with how my dad started but worth seeking a neuro appt with this as getting a bit worried?

    Thank you

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  • Tecwyn
    replied
    Thanks Terry, no not mentioned yet as difficulty only come on last few days

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  • Terry
    replied
    Hi Tecwyn;

    The SLT (speech and language specialist) does normally asses the swallow and well as give help on communication ideas and aids.

    His dietitian can prescribe him other balanced diet drinks as well as advice on easier to swallow meals.

    The Mnda have a booklet on the subject as well as other info here:- https://www.mndassociation.org/about...-and-drinking/

    Has anyone said about having a feeding tube fitted?

    Love Terry

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  • Tecwyn
    replied
    Thank you for all previous advice, alongside speech problems my dad now has some difficulty in swallowing most foods and is now only eating protein shakes and some ice cream this development came on very quickly, he is rapidly losing weight and a worrying rate. Does anyone have any advice on what foods he could try or where to go from here?

    Also, he is very weak when walking and holding objects but has not lost the use of any limb as yet, is this typical progression?

    thanks again

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  • Ellie
    replied
    It could take a few months for speech to stop being understandable Tecwyn, or it could take a few years - or maybe he'll retain speech , it is impossible to say...

    Your dad's SLT can advise which form of assisted communication would best suit him - ranging from lo-tech alphabet and phrase sheets and a Lightwriter, to hi-tech apps and eye gaze systems.

    Love Ellie.

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  • Tecwyn
    replied
    Hi, I'm not meaning to be intrusive but is there anyone who can provide some insight into how long it takes for the voice to go when hoarseness sets in and what is the most comfortable way of communicating afterwards?

    Many thanks

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