Results 1 to 10 of 10

Thread: We think mum has MND

  1. #1
    Mrso
    Guest

    We think mum has MND

    Hi,

    Our mum started with slurred speech and being unsteady on her feet back in June.

    It has progressed really quickly since then, her speech got worse and worse and now she can hardly talk.

    At first it seemed to be her right leg that was weak but in the last week her left leg now doesn't work properly
    She seems to look at them but they don't move!

    Her swallowing is bad, she chokes on things and has trouble taking pills.

    She can't cough either and she has COPD.

    The Drs were useless I kept taking her and telling them she wasn't right but they didn't know what it was
    And at first referred her for a stroke assessment but they said it wasn't that. Then they said it was likely to be a stroke
    (As they had no other answers!) but it's got worse and worse. Last Friday I had to get in touch with her geriatrician (mum is 83) and told them we are in crisis, she can hardly walk and we couldn't care for her.

    They admitted her and she is in hospital now. They are saying likely MND and her symptoms seem pretty text book I think? She also has bouts of laughing so I think that is also a sign of one particular type?

    She isn't stupid but I don't think she understands what's happening. She seems vacant a lot.

    They talk about people living 3-5 years following diagnosis but mums has progressed so quick? What can we expect now?

    I'm worried we can't care for mum at home on our own and am really scared about the future (still feel in shock)! Feel scared for her and how frightened she must be feeling.

    Any help/advice would be very much appreciated.

  2. #2
    Mrso
    Guest
    Should have said Hi I'm Claire btw

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,730
    Hi Claire,

    Sorry to hear of your mum’s woes. At least she’s in hospital now – traumatic though it is for you both – and will be diagnosed with something. If it is an MND, it sounds like Bulbar onset ALS as it started with speech problems. The laughing you mentioned is called Emotional Lability and can be somewhat controlled with antidepressants.

    Prognoses vary wildly and can depend on factors inc age, general health, nutrition etc. The COPD won’t help unfortunately. If she is diagnosed with an MND, she should get the support and care she needs.

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

  4. #4
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    8,067
    Hi Claire and welcome to the forum;

    I'm sorry to hear about your mum's condition and symptoms. It does sound like Mnd but it could be some other things. Hope that they are doing loads of tests so that both of you can get a speedy diagnoses.

    As Ellie say's, "Emotional Liability" can normally be controlled with drugs. I have it and now choose to leave it untreated, but I do laugh or cry uncontrollably.

    Your mum's mind it's probably normal in most respects but her losing so much so quickly is just to much at the moment.

    Has she used a Tablet/computer as she could use something like that to talk.

    Please feel free to ask any questions.

    Best wishes, Terry

    PS:- Thanks for putting your name in.
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
    Mrso
    Guest
    Hi both, no she doesn't use a tablet, we are using pen and paper. I feel for her as the other ladies on the ward are chatty and she just sits and stares at them and i know she would love to be able to join in.. She just cant

  6. #6
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    8,067
    Hi Claire;

    There are other things that she can use and hopefully a SALT, (speech and language therapist) will see her soon.

    Both Ellie and myself have no or very little speech so we know what it is like to sit and listen and finding it hard to join in.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  7. #7
    Mrso
    Guest
    We had a confirmed diagnosis today of MND.. They also did the EMG and in some places ie legs there was no response. They said she has about a year left. We are devastated. They are sorting out her discharge but i just dont know how we are going to cope.

  8. #8
    WendyWooG
    Guest
    Hi Claire
    I am so sorry they confirmed the diagnosis for your mum, you will be in shock for a while and it's very scary, but now she has the diagnosis a team will be put in place to provide support. You will have occupational therapist, physio, speech and language therapist district nurse and social services. It can be a whirlwind to start off with, and take a little while for everyone to get on board but help is there, you should be able to arrange a package of carers to assist with mum. There is lots of equipment you will be provided with for her and she will be eligible for benefits.
    Get in touch with mnd connect, they can give you lots of information and advice on the help you are entitled to. I would also advise getting linked up with your local hospice as soon as possible, I have found mine absolutely lovely and they are very good at pulling everyone together. Your GP should be able to refer you. They can offer advice and counselling for the family not just the patient.

    Above all take time out, take a deep breath and try not to panic, it can seem overwhelming, but you don't have to do everything at once.

    Hugs
    Wendy x

  9. #9
    Kernowcluck
    Guest
    Hi Claire, sorry to hear about your mum but it least you know have a diagnosis and horrible though that may be you may be able to access services and equipment quicker. Don't fixate too much on the doctors prediction of the time your mum has because in all honestly they can't tell you. This condition is very erratic, affects everybody differently and know one can really tell what it is going to do next and when. They gave me nine months to live two years ago and I'm still going and I'm sure there are others on the forum Whowill tell you the same? As said try not to panic and make sure that mum at least gets referred to a good OT who will be able to access equipment and give you lots of advice.

    Big hug KC

  10. #10
    Nixx
    Guest
    Hello Claire, I'm so sorry for your sad news. My mother in law had her MND diagnosis confirmed just 2 weeks ago and it's very difficult.

    Like you, things are moving very fast and seeing her deterioration is hard to come to terms with (compounded in our case by a total refusal by her to accept any help).

    In the first few days following my MIL's diagnosis my husband was very fixated on the time his Mum has left but we realise now that you have to deal with the here and now and getting things in place to make life as comfortable as possible is the priority. That's what we are working towards.

    We reached out to our local MND Association last week and they have been great - reach out to them too as they will be a massive help.

    Sending hugs
    Nixx

Posting Permissions

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