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Thread: biomechanical orthotic devices - yes or no?

  1. #1
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    biomechanical orthotic devices - yes or no?

    Hello all

    I have just returned from the chiropodist/podiatrist. She says that one of the reasons, besides MND, that I am stomping my feet and finding that my walking is so laboured is that the right foot is longer than the other and everything is trying to compensate. I have a scissor walk and really problematic balance which is one of the reasons I am so unsteady and stagger all over the place. She says Parkinsons disease sufferers sometimes display the same characteristics.

    She is recommending a prescription for insoles in my shoes which will help to rectify the balance and possibly extend my walking time. It will cost about 250 all in, which we will pay if it is worthwhile. She said they would keep an eye on it and renew/adapt over time. She says people feel the benefit for years.

    I explained to her that the reality of it is that I have got bulbar onset MND and time isn't on my side! I told her I wasn't being maudlin, or depressed but life expectancy is limited. In truth, although it would be wonderful but I don't tend to look ahead that far! No one can predict how long I have got and Peter and I raised the question of "Is it really worth it?"

    Of course, I want to keep on my feet as long as I can. That goes without saying and I am fighting MND as much as I can, every single day! But in the end, I know it will catch up with me - not too soon, I hope! I just cant see the point of purchasing something with limited use but, on the other hand, if it does help to keep me on my feet, I will grab it with both hands!

    Has anyone else had these insoles made on prescription. If so, is it beneficial?

    Just any advice really.

    Thanks


    Joycie x

  2. #2
    Forum Member pete's Avatar
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    Dear Joycie ,

    You know in yourself how you feel and no one knows what our future holds for us ,you make your life as easy as you can if that means trying these insoles, then go for it, I had long given up with life predictions given by those who profess to know all, if you can prolong you mobility then do whatever it takes, because once you become immobile and rely on a wheelchair that does bring with it many issues that are not readily discussed in books, so be the Joycie we all know and love , long may you continue your walking however odd it may be,it's worth it to still keeping you mobile and that is priceless .

  3. #3
    Forum Member Steve's Avatar
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    I will be honest Joycie, I had the insoles for about two months before having to go into the chair full time.

    In my case they were free but I had to wait the obligatory 6-8 weeks for them. They were very useful, I used to suffer from a poor gait which was the result of numerous hamstring and ankle injuries. I did find they helped my balance but it was the inability to lift my feet that cost me in the end.

    Everyones journey is different and it was at a time when I was progressing really quickly.

    Did they say how long they would take?

  4. #4
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    I would guess that they would help, but only for a limited time. The trouble is with these people they do not fully understand MND. Only you can say if the expense is worth it.

  5. #5
    Forum Member john's Avatar
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    Joycie,
    It beggars belief that a medical professional says you need these and the NHs says you have to pay. In reality most mnd patients cost the NHs very little, they spend most of their time a home, there seem to be few effective treatments even for symptoms as common as drooling and saliva so it seems dreadful that they can't find 250 for the necessary insoles. Surely if they are a medical need then they should be provided immediately and at no cost and without the wait that Steve had to suffer. Timely provision could have doubled the beneficial use to him. Why do the NHS fail to appreciate the speed of change and demonstrate some urgency when dealing with the needs of mnd sufferers? I quite often felt that they ignored our requests for help and hoped my wife died before they had to meet the cost of providing help. I can't believe this really was the case but it certainly felt that way.
    Rant over.
    If the cost is a problem have you thought about contacting the local Rotary club. In Yorkshire a 20,000 pot has been created to provide assistance to mnd sufferers in circumstances such as yours. I do not know if a similar fund exists in your area but if not the amount in question should be well within the reach of the local club and you should get a quick response.
    John

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    The decision is yours and yours alone to make Joycie, but to be blunt if it was me I'd go for it !! If if helps, and works and keeps you mobile for however much time... who knows?? weeks... months... years go for it girl you deserve it

    This goes back to John's point, as well as Mik's regarding the IBC money and funds. The funds should be readily available for you to have access to purchase whatever and whenever your healthcare needs arise. Providing the money from the IBC to those actually suffering with this illness should rank right up there with Research.

    CCxox

  7. #7
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    ....remember those perennials Joycie

    xoxoxo

  8. #8
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    The chiropodist is a private operator so there is no NHS involvement at all. It isn't the money that is the problem. 250 is a minor amount if I can carry on walking but, as Steve describes, my feet are getting increasingly difficult to pick up and I don't want to waste the money! It will take 6 weeks for them to be produced, once all the measurements are done so we are looking at two months minimum She was saying today that it can be sorted out again in 4 or 5 years (?) I did try to explain to her, by pad and pen, the limitations of the life expectancy of bulbar onset MND but she said, and I quote "Well, you know, people do live a lot longer than that. I know people with Parkinsons........and some of them live a long time!"
    That was when I put on my shoes and walked out. Either she is a clairvoyant and knows something I don't or she knows nothing. I am very philosophical about death and dying but people who don't really know should keep their opinions to themselves. I only had a pad and pen with me today, if I had had my predictable she might just have got it both barrels! But I suppose she meant well! I agree with CC, and Steve and Pete, anything that helps is worth having. I do stomp around town and lose my balance a lot and she seems to think that insoles will improve that. It is just that things can change on a sixpence, cant they? Thanks for all your replies Love Joycie x

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