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Thread: Kennedy's disease , .

  1. #1
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    Smile Kennedy's disease , .

    Hi I'm Jim I have Kennedy's disease and was diagnosed in 2011, I was at least relieved to know what my problems were caused by even if I was quite shocked and upset to have the disease. It's progression has been quite slow as is , generally , the nature of Kennedy's but now I have reached a stage where I find it's time to have a feeding tube fitted and start voice banking for the future. I've found the local MND group (Ipswich) very helpful and welcoming over the last 6 months and also my attendance at the St Elizabeth Hospice a life changing experience (I go to the well-being group every Monday) it has taken me some time to attend but I'm glad that I did because the group and people I've met have meant that I have become much more sociable and positive, are there any other Kennedy's disease people using the forum I wonder?

  2. #2
    Forum Member Terry's Avatar
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    Hi Jim and welcome to the forum;

    Glad to see you've joined us. Please feel free to ask any questions or share things with us.

    I don't no if anyone that posts here has Kennedy's but I do know of someone else that has it at our hospice with it.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
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    Hi Terry thanks for reminding me about the forum, It's interesting to know that there's someone else with Kennedy's at the hospice perhaps you could introduce us sometime. I had my appointment at the gastro dept yesterday and they explained the "RIG" feeding tube very well I willed you know when I have any more questions mate , I'm sure I will !
    Cheers
    Jim

  4. #4
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    hi Jimbo. My Husband Mick had his rig feeding tube fitting in January. He just has 50ml of water daily through it at the moment. Good Luck with it

  5. #5
    Forum Member Lynne K's Avatar
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    Hi Jim, welcome to the forum and I hope that your RIG procedure comes quickly and helps. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #6
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    Hi Jimbo

    Welcome, you will find lots of support, advice, words of wisdom as well as friendship on this forum.

    All the best to you in the days ahead

    CCxox
    .

  7. #7
    Forum Member Kayleigh's Avatar
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    Hello Jim and welcome to the forum,

    It's great to hear that you are getting a lot of support, and that you enjoy socialising with people at your local MND group meetings and at your local hospice.

    I think that voice banking is such a useful option for us, and I understand that many forum members have already banked theirs.

    I hope everything goes well with getting your feeding tube fitted.

    You might have already seen the information sheets about voice banking and feeding tubes on the MNDA website, but just in case you haven't, I have posted links to them below:-

    https://www.mndassociation.org/wp-co...ce-banking.pdf

    https://www.mndassociation.org/wp-co...be-feeding.pdf

    Best wishes,
    Kayleigh
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
    Forum Member Terry's Avatar
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    Hi Jim;

    I have asked the hospice if he is still there and them to get back to you and me.

    Love Terry

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