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Thread: Nervous about tomorrow

  1. #1
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    Nervous about tomorrow

    Tomorrow we have a physio and OT visit. I must confess that I am quite apprehensive. As no one has any idea of how quickly MND will progress, I have no idea of how this will impact on our house, and how we will be able to cope here. But I am glad that they are coming, and hopefully this will be the first step in putting together a support system.

    Weve had a good weekend, and my husband seems to be taking more care, so there have been no more falls. Hes still not talking about things, so I dont know how tomorrow is going to pan out. My daughter is coming over as well, its for moral support, and also as she has a disabled child she knows a lot about problems with access and mobility.

  2. #2
    Forum Member Terry's Avatar
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    Do Try to get your hubby to accept things, Polly;

    Just tell him now, we can put them in the garage but if we don't take things now. we might have to buy things in the future.

    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.

  3. #3
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    Good Luck. I too struggle with apts and coming to terms with it all

  4. #4
    Forum Member Lynne K's Avatar
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    Good luck for tomorrow Polly, Lynne x
    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.

  5. #5
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    You are right Terry, but that’s not really the problem. I know I overthink things, but I’m thinking of bigger things like access upstairs, and what if we need a bathroom downstairs. It’s very hard when someone is still very positive to discuss what lies ahead. I’m going along with how my husband is dealing with things, but it doesn’t stop me thinking about it!

    Shrew, you are right. It’s very hard to come to terms with things. It’s quite unbelievable that all this has happened in such a short time,

  6. #6
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    Thanks Lynne! X

  7. #7
    Forum Member Barry52's Avatar
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    Hi Polly,

    Make sure you describe the worst days for your husband as it is our inclination to play down how this disease affects us. You get no points on the assessment scoring for saying we are coping.

    Best wishes,

    Barry
    Im going to do this even if it kills me!

  8. #8
    Forum Member Gillette's Avatar
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    Hi Polly,

    The OT is a crucial person in your and your husband's support team. It's a good idea to try to have a good relationship with him/her as they are likely to have an important role in your husband's MND journey.

    If there is anything you don't understand or any questions you need to ask, the OT should be able help you.

    Try not to worry about the meeting. Keep a note of the names, telephone numbers and email addresses of the Physio and OT so that you can contact them if you need any help.

    Sending hugs to help relax you before the meeting.
    Dina


    Trying to keep positive, but not always managing.

  9. #9
    Forum Member nunhead_man's Avatar
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    Hi Polly,

    Can I add to that in that our occupational therapist has been very helpful, at least as far as pointing out that is quite difficult to convert our existing property and that we may need to move if I lose mobility.

    She has been extraordinarily helpful in looking at alternatives and finding ways forward.

    So unless you are very unlucky in the person who comes to see you you will have be a strong advocate in obtaining support for you.

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  10. #10
    Forum Member Kayleigh's Avatar
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    I hope all goes well today Polly. Hopefully your husband's OT and physiotherapist are helpful, knowledgeable and friendly.

    Love and best wishes to you and your family,
    Kayleigh xx
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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