Page 2 of 3 FirstFirst 123 LastLast
Results 11 to 20 of 24

Thread: This is me, warts and all.

  1. #11
    Forum Member
    Join Date
    May 2018
    Posts
    312
    A warm welcome to you Gillette, although I am obviously very sorry for your diagnosis.

    Like Lynne, I am sorry for my late reply, I think I must have missed your original post. Dont worry about not using your name, your user name is great. It took me a while to tell even close friends about my diagnosis because i needed to come to terms without myself.

    I hope you have good help and support to avoid falls and to keep safe. Ironically I had less falls after my diagnosis because I stopped struggling to walk and used a wheelchair. I still can walk a few steps using a rollator at home as long as I have supports to lift my feet and I use it to transfer. We do go out every day... Most places are wheelchair accessible although sometimes it involves a little homework first.

    There is always really good practical advice and emotional support on the forum.
    Take Care, Gillette.
    Love Debbie x

  2. #12
    Forum Member Boiler68's Avatar
    Join Date
    Feb 2018
    Location
    Manchester
    Posts
    130
    Hi Gillette. Welcome to the forum. My husband is under Salford Royal too..he started off with John Ealing for a few years, then Mr Hamdallah and now Amina Chaouch. You’ll find lots of support and good advice here.
    Best wishes
    Boiler x

  3. #13
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    Hi, Lynne K, I also live in Radcliffe! Sorry for the delay in responding to you - life seems to be a blur of carers, OTs, Physios, SALTs, palliative care nurses, drug trial days and anything else you can think of. I am definitely being well supported by the various community teams. I have had manual and powered wheelchairs provided. I have been amazed at the equipment provided - and all free of charge.

    If you fancy meeting for coffee sometime, give me a shout.

    By the way, sorry to disappoint you but I am FEMALE. Ha ha ha! The nickname refers to something other than a mens' razor.
    Last edited by Gillette; 17th April 2019 at 12:09.

  4. #14
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    Hi Deb. I have to use a wheelchair as I cannot walk, weight bear or transfer. Going out can be problematic as there is a shortage of dropped kerbs around the area where I live, meaning that I have to go on the roads, which is not ideal.

  5. #15
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    Hi Boiler68. I saw Dr Hamdallah whilst I was an in-patient - he brought a group of his students to examine me. I haven't seen Amina Chaouch.

  6. #16
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    Quote Originally Posted by Ellie View Post
    Progression often comes in phases - a period of fairly relentless progression can be followed by a fairly benign period.

    Best wishes to you.

    Love Ellie.
    I didn't realise that progression can speed up and slow down. Thank you for mentioning it.

  7. #17
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    670
    Hi Gillette, thanks for getting back to me. I'm going away for 11 days this Friday (Good Friday). So when I'm back maybe we could meet up on or after Wednesday 1st May. See you soon. Lynne x
    Last edited by Lynne K; 17th April 2019 at 19:15.
    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.

  8. #18
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    Quote Originally Posted by Lynne K View Post
    Hi Gillette, thanks for getting back to me. I'm going away for 11 days this Friday (Good Friday). So when I'm back maybe we could meet up on or after Wednesday 1st May. See you soon. Lynne x
    Hi Lynne, I hope you have a great time while you are away. If you give me a shout once you're back, we can agree a time and place to meet. Looking forward to it. Gillette

  9. #19
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    196
    I've decided to "come out" and reveal my name, which is Dina (pronounced like Tina, but with a 'D' not a 'T').

    This probably a good time to let you know that I have a weird sense of humour. I apologise now if I offend anyone, I promise it won't be deliberate. If I do upset anyone, please just tell me to shut up.
    Dina


    Trying to keep positive, but not always managing.

  10. #20
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Location
    Dublin
    Posts
    2,993
    Hi Dina

    And for the record, I look nothing like my photo

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

Posting Permissions

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