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Thread: Awaiting diagnosis

  1. #41
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    Debbie and Ellie,
    Thanks for your ongoing support. Such a lovely supportive forum. I wish you all the very best. I will post again after my husbands appointment at end of May. I started his story here and think it’s right to let you all know his diagnosis.
    Again thanks for reading/listening
    Kitty xx

  2. #42
    Forum Member Kayleigh's Avatar
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    It's always lovely to hear from you Kitty.

    I hope the appointment goes well and your husband is able to get some treatment for his spinal tension very soon.

    Being in limbo, without a diagnosis, can be extremely stressful and unsettling - but hopefully your husband is becoming less anxious about things now.

    Hopefully, your husband will be more interested in the option of using a wheelchair, so that he can get out and about more with you and the rest of the family.

    It took a little time for me to get used to using a wheelchair (and I started to use it gradually, so that I could get used to it) but its definitely worth it - especially as I don't want to miss out on fun days out with my family!

    I had never really noticed before how many people do use mobility scooters and wheelchairs - but since I have been using one, I have realised that they are a very popular and convenient mode of transport for many people - any worries about looking 'out of place' in my wheelchair have very quickly subsided! It's just those pesky high kurbs that get on my nerves!

    Love and best wishes to you and your family,
    Kayleigh x
    Last edited by Kayleigh; 28th April 2019 at 15:18.

  3. #43
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    Kayleigh,
    Thank you for your kindness. I have a wheelchair for him from shopmobility charity for £20 a month. I have it in boot of car for just in case. He has yet to use it. Our local council elections are on Thursday and I know he’s very keen to vote so this may be his only option. Yes I think once he sees the benefit of it,it will be used more and more. Again thank you for your kindness and I wish you all the best. I will update you all after his appointment and then I will leave the group. Thanks again
    Kitty x

  4. #44
    Forum Member Lynne K's Avatar
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    For future voting we can all register for postal votes. I did it a couple of weeks ago. Lynne
    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. #45
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    You can also apply for an ongoing proxy vote

  6. #46
    Forum Member Barry52's Avatar
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    I have done postal voting for years since when I was working I was often away on voting day. It is very useful if you are disabled however I now feel that there isn’t anyone worthy of my support.

    Sorry, political rant over.

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

  7. #47
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    I am glad you found this forum so helpful. Awaiting diagnosis is so hard and seems to take so long. I really hope that your husband has something treatable - it sounds like MND isn't so likely which is great news. Good luck to you all.

  8. #48
    Forum Member chebs's Avatar
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    STILL WAITING
    I haven't been on the forum for a while... this is really just an update, I had to undergo another MRI. and this has confirmed I have progessing frontotemporal lobe dementia. even though "some" are saying I have some MND signs, they are waiting to see more! I'm finding the whole process awful... I'm still having the electrode test, but as yet they are not showing changes..
    Thanks for the support I've had off Ellie,Terry etc, but will keep you informed..
    It's enough dealing with the dementia at moment quite low with it all.
    take care of each other
    Chebsx

  9. #49
    Forum Member Lynne K's Avatar
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    Sorry about your news Chebs, take care. Lynne
    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.

  10. #50
    Forum Member Kayleigh's Avatar
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    Hello Chebs,

    Sorry to hear about your diagnosis. Understandably, you have got a lot to come to terms with and so it's not surprising you feel low at the moment. Hopefully you have lots of support from family and friends.

    It's lovely to hear from you again. I remember the last time you posted on the forum, you mentioned that you have got a lovely new puppy called Indi. How is Indi? I expect that Indi is keeping you and your husband very busy - because puppies usually want lots of attention and regular walks!

    Hopefully, you Alan and Indi are able to get out and about a bit, so that you can enjoy the beautiful Suffolk countryside together. I expect Suffolk in the Spring and Summer-time is particularly beautiful and picturesque!

    Please keep in touch with us on the forum, as often as you would like to.

    Take care.

    Lots of love and hugs,
    Kayleigh xx
    Last edited by Kayleigh; 8th May 2019 at 23:48.

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