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  1. #41
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    Jul 2019
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    Hi Jo
    Get one asap as mine took 6 months to be fitted and by then couldn't walk anyway so no good.

    Good luck
    Judy x

  2. #42
    Forum Member Streetwise's Avatar
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    Dec 2016
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    if you know your husbands profession find out if the charity connected to it can help you, if they can ask them for equipment ,advice on other areas we got a lot of help from our charity instead of waiting for the nhs or social !services! or neighbours!glad you get support here, i had none just left to struggle ,had none since , I check in here once in a blue moon for reasons .

  3. #43
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    Oct 2019
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    My partner has started to have a groof voice is this part of his MND he also says he has a tickley cough. I hate MND.

  4. #44
    Forum Member Barry52's Avatar
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    Hi Jo Jo,

    It is quite common with MND to experience speech problems. I find that because one of the symptoms is over production of saliva and mucus that clearing my throat is a constant issue. There are medications to dry up saliva but this can lead to other problems. I find pineapple juice clears mucus which is often worse in the morning. Has your partner considered voice banking?

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  5. #45
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    How does he bank his voice

  6. #46
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Hello Jo Jo

    I remember your partner was due to have his first appointment with an OT before Christmas. I hope all went well at the appointment.

    Hopefully he will also be seen by other healthcare professionals (including a speech & language therapist who should be able to assess whether MND is affecting your partner's speech and also provide advice and infomation about speech therapy and voice banking etc).

    There is also some information about speech and communication (including voice banking) on the MNDA's website:-

    http://https://www.mndassociation.org/support-and-information/living-with-mnd/speech-and-communication/

    Love
    Kayleigh

  7. #47
    Forum Member nunhead_man's Avatar
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    Hi Jo jo

    Quote Originally Posted by Jo jo View Post
    How does he bank his voice
    This is quite a good read I think

    https://www.mndassociation.org/profe...voice-banking/
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  8. #48
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    He had a flying visit from the OT but she said she will come and see him again on the 7th. I will ask her who else should be involved and when they might come and see him. Just got back from the doctors he says it might just be a virus and have given him antibiotics. Fingers crossed that is all it is.

  9. #49
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Jo Jo,

    If it's not viral, your partner should see an SLT - Speech & Language Therapist - either through the MND Clinic or in the Community re voice changes and voice banking.

    The tickle could be swallow, saliva or reflux related and should be assessed.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #50
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    Oct 2019
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    Hi everyone hope everyone is coping as best they can. My partner is now using a wheel chair and is loosing strength in his right arm and hand. His neurologist wonít say what MND he has als or pls . There seems to be a massive difference in prognosis. Heís still working but has reduced to part time and Iím working full time but itís getting so hard to juggle everything and I feel guilty for leaving him at home on his days off. I also find myself getting moody due to being emotionally and physically exhausted. Then feel guilty as I know he must be going through worse than me. If heís only got months I want to pack in working and spend time with him then worry about the mortgage and bills but if hopefully heís going to be with me for 10 years plus then I know I have to continue to work for as long as possible. At what stage will they give me some Idea of what is the likely future or donít they ever tell you.

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