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Thread: Husband diagnosed on 16th January

  1. #11
    Forum Member Terry's Avatar
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    Hi Wallywoo;

    Most of us have been in similar situations and know how hard it is to get your head around things. To get a quick informative reply does ease the situation a little and you don't feel so isolated.

    Glad to hear that things are now getting sorted and don't be afraid to ask or try to push some of the services.

    Love Terry

  2. #12
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    Welcome to the forum Wallywoo. I am so sorry for your husband's diagnosis.... It's such a shock for you both !

    It's a pity that sometimes the professional support and care is not available until there is a formal diagnosis because the early days and extra tests are so scary so it is hard not to feel isolated. Well done for chasing it up.

    I found the support from the MND nurse, physio and OT invaluable in the early days and now they are just a phone call or text away if I need advice or anything has changed. There is always practical and emotional support from the lovely people on this forum so you can reach out for help anytime.

    Take Care and look after yourself too because its very hard for the partner .
    Love Debbie x

  3. #13
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    Thank you, I also heard red grape juice is good. But I have never tried that one. Yes the hospice nurse was very nice and help full. It is all very strange at the moment. Even a district nurse came into day . I have never seen so many people. A dietician is coming in 2 weeks time. I hope you and your family are well
    love Sheila x

  4. #14
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    Hi wailywoo, I am so pleased that things are now moving for you and your husband. This is a lovely forum and people have been so kind and helpful. I hope the pineapple juice helps, I also heard red grape juice is good.
    Love to you and Terry. Hear from you soon.
    Sheila x

  5. #15
    Forum Member Kayleigh's Avatar
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    Hi Sheila,

    I haven't tried red grape juice either - but am going to add it to my shopping list so that I can try it out. Following your helpful tip about the pineapple juice, I drank a small 200 ml carton of it today and even that small amount helped to clear my throat - it was very refreshing as well!

    It can seem a bit daunting meeting so many new people. However, once you have met them all, hopefully you will find comfort in knowing you have a team of friendly professionals who will offer you ongoing help and support.

    I hope you are able to be a bit less anxious about things. I am a worrier and so I understand how it's is not easy to control anxiety - but I find it helps to try and take one day at a time and to accept all the support that is available.

    You have already settled in well into this forum family, with your very kind words of advice and support. Athough we would rather not have to be here, it is great that we support each other as much as we can. Your tip about pineapple juice has really helped me - and so thank you!

    Hopefully you are eating and sleeping enough.

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

  6. #16
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    Hubby getting worse

    Hello again,

    There are a few things I wanted to ask.

    Does anyone know of a place we could purchase a wheelchair for hubby? He is 6'2" and we are having difficulty finding one for his size. Ableworld say they don't have anything big enough for him. I have looked on the internet and it is like a minefield.

    He had a fall on Sunday and hurt his knee and has been using 2 walking sticks instead of the usual one or none and has lost all confidence. He is due to go for a hospital appointment on Monday for a ventilator trial as a day case and will not be able to walk from the car to the appointment and we could do with getting a wheelchair asap.

    His MND progress is alarming at the moment and he is finding it difficult to cope with the fact that he can't do things for himself like he used to. It is very frustrating for him and I find it so hard to watch.

    All in all it is getting more and more difficult as time goes on and this is only 2 1/2 months after diagnosis.

    Just wanted some contact really.....I know it isn't happening to me, but I feel a little alone in coping, as children a fair distance away and feel unable to ask them for help.

    Wailywoo x

  7. #17
    Dear Wallywoo

    Please accept an electronic hug.

    You're doing brilliantly in a terrible situation. And you're not alone. Everyone here is only a mouse click away.

    I just wanted to mention about wheelchairs. It may depend on the services available in your area, but you should be provided with one for free, possibly via your physiotherapist or OT. It's important that your husband is measured to ensure he has the correct size chair.

    But just for the Monday appointment specifically, I would hope that the hospital would be able to provide a chair and a porter to give safe transfer from the car. I know it's another chore, but do ring them and explain your need.

    I'm really sorry to hear about the fall!

    Thinking of you both.

    Doug

  8. #18
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    Hi Wailywoo,

    I am so sorry for your situation. These early days are so hard for both of you, especially when you have not got the equipment you need to make life easier or safer. I understand how you feel about not wanting to worry your children but I hope you have some support too and that you are taking care of yourself.

    If your husband has been diagnosed he should have an OT and physio who will do a wheelchair assessment to get the right one to suit his needs.I understand why you feel it is a minefield because there is so much choice and a wheelchair should suit both your needs. Our OT came round the house within days to talk to my hubby and I about what adaptions we would need. I found walking with sticks unsafe because they wobbled so I used a rollator in the house and a wheelchair or scooter out. A fall really dents our confidence both physically and psychologically (not to mention being painful !) so it is really important to minimise the risk and I hope you have outside help.

    If you haven't a wheelchair before your husband's appointment the hospital should provide one and if you let them know they should send a porter to help. I'm not sure if you have a blue badge but before we had my husband used to drop me off and leave me in the entrance in my wheelchair. He did return !

    I am thinking of you both . These early days are so alarming but hopefully things will settle down when you get the help you really need.

    Love Debbie x

  9. #19
    Forum Member Ellie's Avatar
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    Oh Woo, I'm sorry you've both been left to your own devices - having good support and the right equipment at the right time is vital with MND.

    Has hubby any support from MND Nurse, OT, Physio, Clinic?

    If he hasn't been referred to / put in contact with his local hospice, you should ask his GP about it. They are fantastic places and their OT and/or Physiotherapist are great for hurrying up equipment needs and requests. They may loan your husband a wheelchair too.

    The Red Cross also loan out manual wheelchairs - in general the frames and footrests are height adjustable to cater for people of different heights, usually an OT will do this to get the correct seating position but I'm sure it can be done at home with a spanner and allen keys...

    Anyway, you should NOT have to buy one

    Hope the ventilation / BiPAP trial goes well.

    Big hug and hope your hubby gets proper support ASAP.

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

  10. #20
    Forum Member Kayleigh's Avatar
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    Hello Wailywoo,

    I'm sorry to hear that your husband has had a fall. It must have been a nasty shock for both of you. I hope that he is feeling a bit better now.

    May I suggest that you phone the MND Connect helpline. The MNDA are able to advise us about obtaining equipment, such as suitable wheelchairs, and they also have a 'wheelchair support service' - for further details, please click on the link below:-

    https://www.mndassociation.org/getti...chair-service/

    Also, in case you are interested in contactIng the Red Cross about their wheelchair hire/loan service, here is a link to their website:-

    https://www.redcross.org.uk/get-help...w-a-wheelchair

    Coping with the impact of MND can feel very lonely and isolating, especially if we don't have much support from family or friends living close by. Please feel welcome to ask for advice and support on this forum, as often as you like.

    There is also a lot of local support available for us eg from Regional Care Development Advisers and at MNDA branch/group meetings. I have provided a link to the MNDAs 'local support' webpage below:-

    https://www.mndassociation.org/getti...local-support/

    I hope you and your husband get more support very soon. Please don't hesitate to contact MND Connect and/or your Regional Care Development Adviser, if you would like to (the Advisers are very friendly and knowledgable about what local support/help is available to us, and they are available to offer us ongoing support and advice).

    Love and best wishes,
    Kayleigh x
    Last edited by Kayleigh; 4th April 2019 at 15:11.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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