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Thread: Hello to everybody

  1. #11
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    I fell on the ice and sludge this morning, got soaked. Had help to get up. Not hurt. Just frustrated and a bit angry at the NHS for the sighting of this centre in a bad place for anybody like me to access. This was when going to my speech therapist for the first time. I seem to be more wobbly in the last few weeks. Over xmas I've been considering my options re when to give up working. I am going to start voice banking today. Do we sometimes deteriorate quicker for a few weeks then slow down? Or is this the pace that I must get used to? All comments welcomme.

  2. #12
    Forum Member Ellie's Avatar
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    Hi Lynne,

    Sorry about your fall, hope you recover quickly.

    Progression tends not to be linear - often people with ALS/MND get periods of marked progression followed by a fairly benign period - but there's no rule book!

    Infections, illness, trauma, stress, poor sleep and inadequate nutrition can contribute to progression too. It helps to keep on top of the game!

    All the best,
    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
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    Hi Ellie. Much appreciated advice. Thanks x

  4. #14
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    Quote Originally Posted by Lynne K View Post
    I fell on the ice and sludge this morning, got soaked. Had help to get up. Not hurt. Just frustrated and a bit angry at the NHS for the sighting of this centre in a bad place for anybody like me to access. This was when going to my speech therapist for the first time. I seem to be more wobbly in the last few weeks. Over xmas I've been considering my options re when to give up working. I am going to start voice banking today. Do we sometimes deteriorate quicker for a few weeks then slow down? Or is this the pace that I must get used to? All comments welcomme.
    Hi Lynne - I have completed my voice banking - it can take some time so be prepared for multiple sessions. But here is a tip that might work for you - ask all your friends and family to take a session - then you will truly have a "family' voice. A chap wanted a 'yorkshire' voice and so he asked al his Yorkshire friends to contribute - worked very well apparently.

    As for work - carry on until you can't - helps tremendously with mental health.

    Kind regards

    Chas

  5. #15
    Forum Member Terry's Avatar
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    Hi Lynne;

    It's frustrating going to somewhere that should help you and falling due to ice, etc.

    Good that you are moving forward by looking at voice banking.

    As Ellie says, Mnd seems to attack in waves and you could see some improvement although it could be us just getting used to the new restrictions and leaning to cope better with them.

    Love 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.

  6. #16
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    Hi Ellie. Much appreciated advice. Thanks x

  7. #17
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    Thanks Terry and Chas. I'm going to do the voice banking myself. My speech therapist said to do it in manageable chunks, not to keep going if I feel tired as my voice recording would be affected. So I'm going to download the programme tonight and perhaps start tomorrow morning

  8. #18
    Forum Member Terry's Avatar
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    Hi Lynne;

    Don't rush too much. You need a good head mic and a quite room. I believe Owen done a good video on the subject but I can't find the link.

    What program are you going to use?

    The Mnda have head sets and might pay towards the costs. Involve your speech therapist as they will help if you get any problems and should provide the equipment if you need it later.

    As for work, see what options you have as regards to working less hours days etc.

    Love 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.

  9. #19
    Forum Member AndyB's Avatar
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    Hi Lynne

    Glad you didn't hurt yourself and some one was around to help you up. One of my biggest fears is falling and there being no one around to help as I really struggle with my legs now.
    I have banked my voice during the last 12 months just in case, though my throat is not currently affected.
    I'm still working, though I've been off sick for the last 6 weeks as it's all getting a bit difficult. I'm hoping to try working from home to see how that goes, otherwise I'll have to retire a few years earlier than I had planned for.
    As for the disease progression, I seem to have spurts in deterioration and then it seems to settle down again, but obviously I'm slowly getting worse. I agree with what Terry says that when things deteriorate you adapt to the deterioration such that you think the progression has slowed.

    Best wishes Andy

  10. #20
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    Thanks Andy and good luck with working from home. As I'm a driving instructor I cannot do that at home but wonder what else I could manage. Terry my speech therapist recommeded Model Talker 2. I haven't downloaded it yet but will when I get the time. My husband is a musician (retired teacher of sciences and IT) and he records live music and works on it at home. He said that he has a decent mic and separate headset that I can use. He's going to set me up in our quiet back bedroom that I have a desk and all my knitting machines and yarn in. In case you are wondering I haven't done any knitting for ages and don't know if my week right hand fingers can manage it but I'm going to try soon because one of my family is expecting and it'd feel good to do some baby items.

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