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Thread: the reality!

  1. #1
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    the reality!

    If anyone had asked me two years ago what I loved most in life, I would have said that high on my list were talking, eating and rambling holidays in the countryside. Not much to ask, is it? Pretty normal kind of stuff. Well, my voice is fading and I am having to carry around a clipboard and pen I can put up with that., I have to be very careful what I eat nowadays. I can put up with that. However, this week we were out with the motorhome in the Peak District, at Chatsworth House, at Eyam Plague Village and then at Ilam Hall. Walking is becoming problematic. I am out with a stick now, finding it hard to put one foot in front of the other sometimes. The lovely lady at Chatsworth House took pity on me, struggling up the hill and got out her buggy for me to have a lift. So now it sees my long distance walks are out of the question. That I do have a problem with. This MND manifests itself in very cruel ways, doesn't it? But are we miserable? No, we are not. We are planning holidays to favourite haunts, home and away, before it gets too difficult to get there. Sorry, folks, just a rant. I know you all understand!

  2. #2
    Forum Member Terry's Avatar
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    I did not read it as a rant. Just telling the truth and getting on with living life. Good on you. We can only do what we can and you are doing that. It is so nice to have people offer help, it makes me feel humble.

    Go for it, Love Terry

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    Terry. people are lovely. We were camped next door to a couple in their early 50s. It came up in conversation that I had MND (well, my speech is so strange, it is easier to explain to people what the problem is!) Anyway, our gas cylinder connector went peculiar and we had to turn the gas off. The engineer came out and said we would be well advised to change from butane to propane. We were in the middle of the Peak District and a bit bamboozled as we were away from home. This young couple said "we have a spare Propane cylinder, you can have that?" We remonstrated with them about it but they insisted. Refused point blank to take monies for it. And why? Because the man said he had a friend who died of MND some three years ago and he said he would go a million miles to help anyone suffering from it. How wonderful was that. People are so kind.

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    We sound to be in a similar state to each other. My voice is becoming harder for everyone to understand and I make informed choices about what I eat. As to the walking - I used sticks for a while but now they are too hard work so I moved on to a four wheeled walker, which was great for awhile, it's even been abroad. Twelve months ago for outdoors I had to progress on to a scooter.

    Have you thought about a scooter (I resisted it for quite a while I thought it was giving in!!) but now I can go on walks again. It has given me so much pleasure - I can go a walk with family and friends even take our two dogs a walk, pop up the village to post a letter .... and so much more.

    I can't think of many positives of having MND but at least (if my battery is charged) I can go as far as anyone else - and - no aching legs when I get home! Please consider a scooter it has improved my life so much - I think one might help you too.

    Cheers Anne

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    Forum Member marieline's Avatar
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    Hello, so sorry to hear that. It creeps up on you when you are not paying attention. That is what MND does best, just don't let it discourage or deter you from what you love best. Keep doing what you love, even if you are slowed down, just remember to rest in between adventures.
    I still have a lot of grief attached to not being able to hike, but occasionally i still go on easy tours and managed to walk at least 1km. I feel bad that i am holding the others back but i am learning not to be too hard on myself.
    Best wishes
    Marieline

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    thanks all. That is good advice about the scooter, Anne but, in reality, it doesn't do the job here where we are (too hilly!). It perhaps will come in handy if we go to stately homes, or the National Memorial Arboretum or in big shopping complexes. My husband had one for 14 years - never in my life did I imagine I would be having this conversation! But never mind - we will cope! Marieline, you are right. It didn't stop us over these last few days. We walked twenty minutes to the pub and twenty minutes back one evening and then next day, twenty minutes to Chatsworth Park, all around the house and grounds and twenty minutes walk back. I have Bills stick with me and it is a godsend. I am to see the Orthotist at hospital next week because chiropodist says I have a dropped arch (but MND connect think it may be MND muscle wastage or even the start of dropped foot!) We will see what he says. So, we progress, don't we? It is good to know you are all on this forum and are suffering the same symptoms. What an extraordinary disease this MND is! x

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    Forum Member Davec's Avatar
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    WillsandCo this is why you are my inspiration
    Thank you for being there
    Dave xx

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    Good on you Will, I like your positive attitude, I am trying to be the same. I was a public speaker and also ran a walking club for 12 years, I loved my walking. Today I can hardly speak and now my ankle hurts so my mobility is being effected. We are selling our 4 bedroom house with large garden and buying a bungalow, moving from a small town into a village. I intend to buy a scooter so I can go to the shops, library, bank etc. Keeping your independence is so important.

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    Will good luck with your scooter, it should keep your independence. I have one and live in a hilly area it will easily do 20 miles and climb roads over the moors, 1in 10. Unfortunately I am struggling to use it now, going out of the front door is a challenge. I refuse to give up our home is being adapted so I can move around in a motorised wheelchair and get out through the garage. It is life changing, last year I was trying to complete all the Munros in Scotland I did 220 out of 283 then had to finish.
    Hope to get out soon
    Never give up
    Best wishes Clive

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    well thanks guys and gals. Your posts are inspirational. Never give up, they say, don't they? Clive, we are up staying in Clashnessie high up on the Sutherland coast in mid August for a week. My pal, who has a croft up there, has been climbing Munros all his life. Two years ago I was out with him. Hope he doesn't think I am joining him this year! Don't know if an old gal with a stick would make it!
    Might make the local papers though, eh? Get publicity for MNDA. So, why the heck not have a go!

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