Page 2 of 2 FirstFirst 12
Results 11 to 18 of 18

Thread: James's Intro

  1. #11
    Forum Member
    Join Date
    Feb 2018
    Posts
    58
    Hi James and welcome..its good that you've joined. I'm a carer for my husband (ex footballer) and we are in our 11th-12th year of this journey. He doesn't talk about his mnd to me much - we just muddle through and take every day as it comes. I'm sure you will find a lot of support here and answers to any questions you have xxx

  2. #12
    Forum Member
    Join Date
    Dec 2013
    Location
    Surrey
    Posts
    415
    ```James/Boiler68:

    Welcome James from another footballer and squash player. Boiler:
    Your hubby has been going a long time.
    Is his diagnosis PLS or ALS?

    regards

    Charles

  3. #13
    Forum Member
    Join Date
    Feb 2018
    Posts
    58
    Hi Charles..hubby has ALS with bulbar issues. Legs still working well enough to walk with help (I walk backwards holding his hands as we face each other) but very unsteady at times. Sometimes we just about make it from living room to bedroom (15 steps) before it's too much. Arms are very very weak- he can tap on laptop and can hold a fork but the length of time it takes him to eat is excruciating to watch so when he's very tired (and if he'll let me) I fork the food to his mouth. Even this takes a long time because he has to chew very carefully and absolutely cannot rush it. We've had a few occasions when food has gone down the wrong way and it's horrible and scary to see as I can't help him. Refuses to have a PEG. Sniff tests and FVCs always good. He giggles uncontrollably at times, speech is slurred and strangers don't understand him but I think (he thinks) his background in sport has helped as his legs were very muscly and strong and seem to be the least compromised. He also has a very strong faith and is very interested in life and living and doing the best he can every day. He also has very good support in me and the children (30, 24, 20 and 17).. best wishes xxxx

  4. #14
    Forum Member
    Join Date
    Jun 2018
    Posts
    8
    Welcome James - i am new too but people on here are very supportive & there is lot's of knowledge / experience here to share

    All the best

    Hunter

  5. #15
    Forum Member Sueb's Avatar
    Join Date
    Aug 2014
    Posts
    198
    Hi James
    Welcome to the forum. I think most people stalk before they pluck up the courage to join in. I am a carer for my Husband who has diagnosed four years now.
    Sue x

  6. #16
    Forum Member chebs's Avatar
    Join Date
    Feb 2018
    Location
    Suffolk UK
    Posts
    28
    Hi James,
    I did a bit of stalking.... But glad I joined the gang!!
    It took about 4 years of lots of test etc before I had my diagnosis, Frontal temporal Dementia (early onset) with MND.
    Well, I hope we talk again, theres a lot of help and understanding on this site
    Take care
    Chebs

  7. #17
    Forum Member nunhead_man's Avatar
    Join Date
    Jul 2017
    Location
    London
    Posts
    145
    Good afternoon James,

    And welcome to the forum for me too - it's a really good place the mutual learning - lots of expertise in different matters here I'm pleased to say is this has helped me a lot as I decay slowly

    Best wishes

    Andy
    Andy

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

  8. #18
    Welcome James

    For me, this forum is a wonderful source of kindness, understanding, information and inspiration. Amazing people post here.

    Never be afraid to ask.

    Doug

Posting Permissions

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