Page 1 of 2 12 LastLast
Results 1 to 10 of 13

Thread: Mum with MND

  1. #1
    Forum Member
    Join Date
    May 2019
    Posts
    5

    Mum with MND

    Hi everyone

    My mum was diagnosed last June with MND literally in the doctors office (her symptoms were that severe and had been left that long because the surgical neuro team that she was under were convinced her symptomology was Ďspinalí) she was admitted to the ward for nerve tests etc. To confirm what we already knew. She already had lost the use of her arms (about January last year) and within weeks lost strength to her legs and come Christmas she was solely PEG fed and can now no longer speak. As you can imagine the quick onset of symptoms is absolutely devastating for us all, but particularly for her.

    She uses a computer system controlled by her eyes to speak (unfortunately her voice was too far gone for a voice bank), however even using this system is too exhausting for her and she usually manages a couple of hours a week on it.

    For the excess saliva she is prescribed glycoperonium (heart med) this seems to lighten the saliva but we still suction and change bins about 10 times an hour... (open to suggestions for better management)

    She suffers from chest pains a lot, so we are wondering whether that is due to muscle deterioration in the chest. We were having physio three times per week but the company (I wonít name them but they are a cancer trust and it is very doubtful they have even dealt with MND to be honest) who have that contract have completely pulled out because they donít have the manpower for long term physio (wtf?!) so we have no help.

    Do others have similar issues of healthcare professionals having no clue when it comes to dealing with MND - the amount of times the GP surgery have called and asked to speak to my mom is beyond funny now (though My mum does joke that we should put her on just to see their reaction!)

    Also, mums personality seems to be changing and her emotions are particularly hard to manage... which I believe emotional lability is one of the symptoms, but this is all very new to us and the quick onset gave us little time to prepare!

    Any advice would be appreciated

    Roo

  2. #2
    Forum Member Gillette's Avatar
    Join Date
    Mar 2019
    Location
    Greater Manchester
    Posts
    416
    Hello Roo and welcome to the forum but sorry for your need to be here. You are in the right place to ask questions: there is a lot of knowledge and experience floating around the forum that you can draw on.

    It sounds as though the last 18 months have been traumatic for your mum, you and your family. Is your mum under the care of the community palliative care team, or the hospice? If not, ask your mum's GP for a referral.

    I don't think I can help with the issues you raise, but I'm sure someone else will be along soon. In the meantime, I am sending electronic hugs to you.
    Dina


    Trying to keep positive, but not always managing.

  3. #3
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Posts
    838
    Hi Roo, I'm sorry about the fast deterioration of your mum. You ought to have a palliative care team involved in your mum's ongoing care. These are an OT (Occupational Therapist), a physio, a speech therapist (these deal with chewing and swallowing issues as well as the obvious speech. It isn't right that you and your mum are left to muddle through with this horrid journey on your own. You must all be feeling devistated. If you can do as Dina suggested and either get your mum a referral to a hospice from your mum's GP, or self refer to a hospice. Hospices have full palliative care teams that could see your mum and they may be able to get a care package set up or at least point you in the right direction. Hospices do councelling, day support and respite care too. Obviously it depends on what resources the particular hospice have. I second what Dina said. These forums are a good source of advice, tips and moral support. 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.

  4. #4
    Forum Member
    Join Date
    May 2019
    Posts
    5
    Thanks guys. She has a three monthly appointment with the MND specialists which has now become a home visit as she is unable to travel, and receives aromatherapy from the hospice. Unfortunately mum doesn’t want to use respite services nor does she want carers, which I can appreciate and ultimately it is her decision, I guess. I’m still a little astounded that the physiotherapists from the palliative care have pulled out rather callously, blaming ‘resources’ and this leaving my father, myself and my brother to do the physio (none of us are particularly trained)... so obviously mum is very down about the lack of services she is receiving in the community so to speak... we will mention it next week at her MND review and see if there are other services she can tap in to as not being able to move her limbs herself is meaning without proper physio she is stiffening quicker than she needs to and thus lifting her is painful.

    Thanks for your kind words and help

    Roo

  5. #5
    Forum Member
    Join Date
    Jul 2018
    Posts
    318
    Welcome Roo, so sorry you are having a hard time x

  6. #6
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,257
    Hi Roo,

    I’m sorry to hear about your mum. From what you say your mother may qualify for nhs continuing health care (CHC). I would request an assessment.

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

  7. #7
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Posts
    3,242
    Hi Roo,

    Sorry you've had to join the Forum.

    Can your mum have physio in the hospice I wonder?

    They might also be able to hurry on the community team!!

    Is your mum on any meds apart from glycopyrronium? An antidepressant can help with the emotional lability and, if her muscle tone is increasing, an antispasmodic may be needed.

    There are alternatives to glycopyrronium bromide but maybe the dose needs to be increased before trying other meds? (amitripyline, hyoscine, atropine are some and Botox injections)

    Take care.

    Love Ellie.

  8. #8
    Forum Member
    Join Date
    May 2019
    Posts
    5
    Thanks for your suggestions Ellie - she’s tried a few different meds with regards to the heavy drooling and this seems to be the best out of a bad bunch for her. She has lots and lots of different meds, she was on an antispasmodic prior to diagnosis. She has lots of different meds, though we are still trying to get the GP to realise that some of the meds are not PEG friendly! Useless sometimes! We have just fought and got Baclofen in liquid form after the GP told us it doesn’t come as liquid yet the chemist said it did but it’s really expensive ��!

    In terms of a mood stabiliser, she takes one for the anxiety etc. Which would have the double effect of mood stabilisation.

    Unfortunately the hospice only offers complimentary therapy and it is Macmillan in our area that would do the physio but they are unable to continue to offer the service as their intervention is not intended as long term (what?! Forgive her for living past their estimations! Shocking attitude!)

    Is anyone able to answer the question as to whether MND effects processing. For example, when I ask my mum a question, she often takes a good five minutes to shake or nod her head and just sits grinning. I didn’t know whether this was a processing issue or whether it’s the inability to actually make the nod or shake of the head...

    Thanks for all of your help guys!

  9. #9
    Forum Member Barry52's Avatar
    Join Date
    Mar 2012
    Location
    Newark on Trent
    Posts
    2,257
    Hi Roo,

    This is copied from the MNDA website and I hope it will help explain what may be occurring with your mum. These symptoms are not present in every body with MND.

    What changes might affect my thinking and learning?
    If you experience changes to your thinking and learning, you may find it becomes more difficult to:
    • make and carry out plans
    • think of things to do
    • do activities in the right order
    • do more than one thing at a time
    • process information and solve problems
    • make decisions after considering the options and consequences carefully • concentrate and take in new information
    • recognise other people’s feelings
    • finish tasks.

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

  10. #10
    Forum Member
    Join Date
    May 2019
    Posts
    5
    Thank you so much Barry! That is really helpful and explains much of my mums symptoms!

    Sorry folks if I’m coming across as ignorant or dense, but this is so new and such a rapid onset! It would seem that most professionals are clueless also (the GP still asks to speak to my mum when she rings for check ups... erm not possible!! Though mum does joke saying it would be entertaining to embarrass the GP by putting her on the phone and her only being able to groan!)

    Does anyone have any information with regards to the genetic side of MND - when speaking to the doctor she wasn’t very helpful! To our knowledge my mum is the only one in her family that has been diagnosed with MND however her brother has recently been diagnosed with Parkinson’s and the symptoms are similar as to how things are affected... I just wondered if there are links?

Posting Permissions

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