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Thread: Riluzole, Sleep & Ventilation, OT/Physio and PEG

  1. #11
    Forum Member Lynne K's Avatar
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    Hi Wallywoo. I'm sorry about the relentless strain that your husbands denial is having on you. I think that you've already had great advice which I cannot add anything to. But I want to second those things. I hope that your husband will soon drop his misguided defensive rejection of any help so that his life and yours can improve.

    I'm glad that you get 'me time.' That's very important. Keep it up.

    I feel really annoyed for you both that the doctor dropped him after diagnosis. Can your GP re-refer him to somebody else? Good luck with up and coming appointments. Love 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.

  2. #12
    Forum Member Barry52's Avatar
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    Hi Wailywoo,

    It is quite common for people with MND to be in denial and that makes it difficult for their carer. As Ellie has pointed out the statement from the OT is clearly based on poor experience of MND. It sounds like your husband has ALS and no amount of exercise will prevent muscle wastage.
    Regarding getting out of the car I use this tool.
    https://www.amazon.co.uk/Ocamo-Safet...12408783&psc=1

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

  3. #13
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    Hi Wailywoo,

    Didn't want to read and run, but I wanted to say that your husband will eventually stop being in denial about needing equipment etc. in a timely manner.

    My Gran was exactly the same- we very often had issues that arose from her unwilling-ness to be prepared for the 'next stage' of the illness that I would then frantically have to ring around to the OT & Palliative Team to get equipment asap. It does make it so stressful (and also very hard not to say 'I told you so').

    One day, it'll be like the penny drops and your husband will finally start letting you pre-plan for equipment and things like that- things start getting a little easier after that, but it meant for us that Gran had fallen one day when nobody else was around (I was at work). By the time I found her on the floor, crying (and half laughing due to the emotional liability issues), she'd been on the floor for 2.5 hours, unable to get up by herself. Even I couldn't lift her so I had to phone my other half to help me pick her up.

    Horrible as it sounds, you almost need to demonstrate the areas in which you're of no help (because you're not physically strong enough to lift him, for example). Once that message has been put across, it may be that he starts accepting more professional help.

    I really hope you get the help you both need to deal with this horrid disease!

  4. #14
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    Hi Lynne,

    Thank you very much for taking the time to reply to my post. I have had a lot of useful information given here and am very grateful to hear from everyone and glad you echo the advice given here.

    I don’t think we are worried so much about what doctor we see anymore. We go to a practice with several doctors, so as the one we saw regularly before diagnosis has decided we don’t need to see him anymore, we will go to someone else if we need to. We were kinda listening to his woes a little when we were there, so don’t really need that anyway!

    I think things are changing around helpful things to make our lives a little easier - FINALLY!!!

    With love,

    Wailywoo xx

  5. #15
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    Hi Barry,

    It’s strange how I read on here how everyone seems to have been told what form of MND they have, where as hubby has not been told specifically. I am inclined to agree with your opinion.

    Thank you very much for the link to the tool to help with getting out of the car, but we have one from ableworld which he tried a few times, but as his legs are so weak, he is unable to get up even when pulling on the device. It can take him about 15 minutes sometimes to get out of the car. We are looking into one of these stand aids. Not sure if we can get one for free or if we have to purchase, but it is getting harder to pull / push himself up from anywhere. We have the physio coming tomorrow with various things, so will see what she comes up with.

    He has decided to go for the PEG now after seeing the dietician today, so that might help with his choking episodes, although he will be on a waiting list and it may take up to 10 weeks to have the procedure.

    Thank you very much again for taking time to send your messages, advice and ideas.

    With love,
    Wailywoo

  6. #16
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    Hi Broostine93,

    Thank you very much for leaving your message. I have a feeling things may begin changing. He has decided to go for the PEG now. He keeps asking about getting some rails outside the front door as he hasn’t been out since his last fall, so maybe that has been the catalyst to get him accepting help. He seems finally to be getting there.

    It is such a horrible disease, as you say. It is so sad to watch too.

    Many thanks again for leaving your message.

    Warmest wishes,
    Wailywoo

  7. #17
    Forum Member Kayleigh's Avatar
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    Hi Wailywoo

    I hope the meeting with the physiotherapist goes well tomorrow.

    Although you have already purchased a manual wheelchair, your husband should still be able to get a referral to wheelchair services - which could be particularly useful if he is interested in being provided with an electric wheelchair/powerchair.

    Although his OT wasn't very helpful with her discouraging advice about him using a wheelchair indoors, it might be that she is not aware of the MNDA's advice - which is that a referral should be considered when a patient 'is starting to experience mobility problems' ... as detailed in the 'Timing your Referral' section of their information about 'Access to Wheelchairs' - link provided below:-

    http://https://www.mndassociation.org/professionals/management-of-mnd/management-by-symptoms/wheelchairs-for-mnd/access-to-wheelchairs/

    Of course it's up to your husband if he wants a referral to be made, but just thought I'd provide that link to the MNDAs advice in case you find it's useful.

    Best wishes
    Kayleigh
    Last edited by Kayleigh; 10th July 2019 at 17:42.

  8. #18
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Wailywoo View Post
    Hi Barry,

    It’s strange how I read on here how everyone seems to have been told what form of MND they have, where as hubby has not been told specifically. I am inclined to agree with your opinion.
    Hi Wailywoo

    I just wanted to let you know that not all of us have been given a specific diagnosis of which type of MND we have. I only know that mine is ALS because I was recruited onto a drug trial involving only ALS sufferers.

    It's good that your husband is starting to accept helpful interventions - hopefully they will make life a little easier for both of you.
    Dina


    Trying to keep positive, but not always managing.

  9. #19
    Hello there, sorry things are tougher for you than they should be during a tough time.

    're the OT might it be useful to speak to their manager and ask for someone with experience of MND? Honestly they should be on top of the situation.

    My husband says no to everything, a hospice stay, hospice at home. You name it and the answer is no. It's sad as this previously understanding and generous man has turned quite selfish. But who knows how I would be in the same situation.

    Lastly the district nurses call to see us weekly. They have a hotline to the GP's and a whole range of services.

    You are not alone, so take care.

  10. #20
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    Hi Kayleigh. Dina & Music man’s wife,

    Thank you very much for your messages, advice and kind words.

    Thank you for the link Kayleigh.

    I read it, but I am not sure what stage hubby is at currently. We had the physio visit yesterday and they offered him a walking frame for downstairs and another for upstairs. No mention of a wheelchair yet and not sure how much longer he will be able to even walk from the kitchen to the living room and from there to the stair lift and stair lift to bathroom and bedroom. She watched him try to get up and still doesn’t think a wheelchair is appropriate at the moment. Oh and she offered him a cushion to make getting out of the car a little easier and a commode on wheels for scooting around downstairs. What’s the difference between scooting around on a commode and a wheelchair?

    He hasn’t been out since his last fall. I know it’s not a week yet but the longer he stays inside the more difficult it becomes to pluck up the courage to go outside again. I have asked them to fit rails outside the front door to avoid him falling again when going out. Not sure how long that will take.

    He also tried a leg lifter last night to help with getting into bed and has now pulled a muscle in his back ribs and is in pain with his breathing. He is not very good with pain and has been awake since 4am - me too. I have said that I will need to help him get his right leg into bed each night (which I did last night in the end), but he is a night owl and I am a lark! He has to make a compromise and get ready and into bed earlier so I can help him. I guess it will take time for him to adjust, but he has been tired and going to bed a little earlier over the last week or so, so maybe it won’t be such a shock to either of us.

    Sorry Dina, I must stop assuming stuff. I was not aware that not everyone knows what type of MND they have. I have just seen it so many times and assumed that doctors / neurologists stated the type, but we weren’t told. Sorry again.

    Music man’s wife, I am sorry that your husband also says no to any help. I was kinda hoping hubby would make some use of the hospice facilities, but it is not to be - at the moment yet anyways. I was hoping that I could also have some help there, but that door shut when he said no. I actually said to him before the physio visit yesterday - don’t just think about yourself when things are offered, think about me too! I think we are getting there slowly but surely. I think overall it was a positive experience yesterday with the physio.

    We don’t have a district nurse visiting at all.

    Well, thank you very much all again for helping out when I was feeling a little desperate!

    With love,
    Wailywoo xx

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