Results 1 to 8 of 8

Thread: Were confused!

  1. #1
    Forum Member
    Join Date
    Aug 2018
    Posts
    19

    Were confused!

    My OH had the first obvious symptoms of MND in early June this year. These being the fasciculations and muscle weakness in his legs. He saw a private neurologist at the end of July who confirmed what our gp had suspected.
    Our confusion is that now in early September he has virtually no mobility in his legs, but little in the way of symptoms elsewhere. This seems to us to be an extremely fast deterioration. Essentially in the space of 7 weeks he is almost totally confined to a wheelchair. Is this fast? Or just us panicking?!
    We seem to have no time to get used to one level of disability and it worsens overnight. Im stating to wonder how long we can live where we do, and how were going to cope if it carries on at this rate!
    Any thoughts?
    Jen x

  2. #2
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,904
    Hi Jen;

    It is very worrying for you.

    The deterioration seems to be quite fast for the legs. If he has very little symptoms in other places then hopefully it will stay like that for a while. I hope he can weight bear and shuffle along a little bit using a walker as that makes it much easier.

    Keep his OT involved to make sure that you have the right equipment.

    Love Terry

  3. #3
    Forum Member
    Join Date
    Aug 2018
    Posts
    19
    Thanks Terry
    He’s starting to find it difficult to use the walker already which is worrying. We live in a very old cottage, with steep stairs and narrow doorways, so the move that we’d thought would wait a while now seems more urgent. However he is a hoarder, and there is SO MUCH stuff to get rid of, the task is daunting! Especially as he appears unable to help in any significant way.
    Jen x

  4. #4
    Forum Member
    Join Date
    Jun 2018
    Posts
    13
    hi Jen.
    I went from slight limp to motor scooter in around 6 months, quick but nowhere near as quick as your case. that said 18 months on although I can't walk at all the rest of my body seems largely unaffected. we adapted the house best we could straight away.

  5. #5
    Forum Member
    Join Date
    May 2018
    Posts
    101
    Hi Jen,

    So sorry for the rapid decline of your husband's mobility. It must be really worrying for you both. My MND effects mainly my legs and I have had periods of worsening weakness and then it seems to plateau for a while, so hopefully your OH will do too.

    I use a walker in the house and a wheelchair or scooter when I am out . I don't know if it would help your husband but my Physio has given me foot supports and things to help me lift my feet ( foot ups ! ) I can't use my walker without them .

    Take Care
    Love Debbie x

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,397
    Hi Jen,

    Yes, that is fast I'm sorry to say The main thing is that he stays safe and doesn't fall and hurt himself. I'm sorry your living conditions are challenging on several fronts.

    Is he now in the NHS system or still attending the private Neuro?

    I presume he had many tests including an EMG?

    Take care,

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #7
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    6,904
    Hi Jen,

    Sounds like you need urgent help. There are sometimes local semi voluntary firms that will help you clear things.

    Try asking around, local council and citizens advice could be of some help.

    Sounds like you have to move, just maybe an OT can advise you.

    Love Terry

  8. #8
    Forum Member
    Join Date
    Aug 2018
    Posts
    19
    Thanks everyone. I know we’ll get there in the end, but like everyone else we just feel so overwhelmed and helpless at the moment.
    We have fantastic support from our local MND team. So much is in process already. It’s just getting our heads around it all. We’ve lived in our house for 30 years, and our youngest was born here, so it will be a wrench to leave.
    OH is in the NHS system. He is having the EMG tests in October, but our private guy says there is no doubt. The OT is coming in a couple of weeks, so I know things are moving, but I still worry!
    I’m very grateful for this forum, as we are in totally unchartered territory here. So thanks again all. Next time I’ll post in the right place!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •