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Thread: Looking for advice from anyone further down the road

  1. #1
    mpmatthew
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    Looking for advice from anyone further down the road

    Hi everyone,

    My name's Matt and I care for my mother. Around 10 years ago she started to show symptoms of a progressive neurological disorder that causes muscle weakness, stiffness, and pain. Since this started Mam has had every test the health professionals can throw at her, but we still don't have a diagnosis. We will celebrate her 60th birthday this year.

    For the last 10 years Mam's symptoms have progressed, sometimes quickly and sometimes slowly. She is now almost wholly tetraplegic, cannot speak, has difficulty swallowing anything but small sips of water (she uses a PEG tube now), and she is beginning to lose the strength to nod and shake her head. We have been told that Mam does not have MND, but her symptoms seem to me a lot like PLS (which I believe is a relatively slow variant of MND?)

    Mam has a team of carers who have helped us greatly. Mam's care is coordinated in theory by her care company managers, but the managers are rubbish so in reality care is organised by me and my sister. In particular we take responsibility for trying to plan ahead to find the right equipment and solutions for problems that we think may one day come as Mam gets worse. At the moment the big challenges are with communication and worries about where her disease might take her next - the unpredictability of this makes it very hard for us to not just constantly play catch up with the illness.

    I'm really happy to see an online community for MND and I hope that I can draw on some of the lessons you have all learned from your experiences. I appreciate Mam doesn't have an MND diagnosis, but without any diagnosis at all she struggles to find a community from which we can learn.

    Thanks for reading all!

    Matt

  2. #2
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    Hi Matt,
    I'm so sorry to hear all of this. I'm nearly your mother's age and I was diagnosed this year. Although my family found the diagnosis difficult, at least they know what I have even though we don't know how it will progress. Ten years of tests sounds really difficult. I'm not experienced with Peg feeding but there will be people who are. Similarly they'll know all about hoists, wheelchairs etc.
    Sorry I can't offer advice but you have come to a good place.
    Take care,
    Bern

  3. #3
    mpmatthew
    Guest
    Hi Bern,

    Thanks for your reply, and I'm sorry too to hear of your diagnosis. The lack of diagnosis is difficult but I think more so for Mam than me or my sister - we are often preoccupied with practicalities! And I think by now we have all come to terms with the very real possibility than we may never get a diagnosis.

    Best wishes to you and your family,

    Matt

  4. #4
    Forum Member Barry52's Avatar
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    Hi Matt and welcome to the forum family where you will find support and advice. I am assuming you are from the north as we refer to mother as mam rather than mum. I am a Geordie by birth but moved around the country with work.

    Your mother deserves a diagnosis after all this time as it will entitle her to benefits she may not be receiving. Given the time span from symptom development it may well be PLS but this is still one of several forms of MND. Has she had tests carried out by a qualified neurologist and if so where?

    The quick/slow progression you mentioned is often part of the disease as we can plateau for a while before the next phase kicks in. If your mother can type then many of us use a text to speech app. I assume the care people have arranged the equipment your mum will need.

    Sorry for all the questions but it will help us understand what advice we can offer to make life easier for your mother and possibly you and your sister.

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

  5. #5
    ccinjersey
    Guest
    Welcome Matt

    Sorry for all you, and your Mom are going through. You have found the right place here for advice, support, information, and friendship.
    Wishing the both of you all the best.

    CCxx

  6. #6
    mpmatthew
    Guest
    Hi Barry,

    Thanks a lot for your reply.

    We are indeed from the North - Sunderland! Where do you live now?

    She has seen neurologists at Sunderland Royal, and most recently a neurogeneticist at Newcastle University. I was with Mam for one appointment with a neurology consultant where she was told that they have ruled out so many options that if they did find a diagnosis it could be that Mam is the first person to ever have what she has (which seems crazy to me).

    At the moment Mam uses two communication technologies: an iPad app to convert to speech, and an eye-gaze camera/grid pad to type out using her eyes. She struggles with both of these nowadays, particularly the iPad, because her dexterity is so poor and the eye-gaze camera exhausts her. We're still working with the local Speech and Language Therapy team at Sunderland Royal but they are struggling to come up with solutions at this stage.

    Any questions or info or advice or anything would be very welcome. Sometimes it's just nice to share

    Very best wishes,

    Matt

  7. #7
    mpmatthew
    Guest
    Thank you CC, I really appreciate it.

    Take care,

    Matt

  8. #8
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    Hi Matt,
    Can't quite believe it - I was initially diagnosed by a neurologist at Sunderland Royal. Then my care was transferred to the RVI Newcastle.
    What a small world!
    Bern

  9. #9
    mpmatthew
    Guest
    What a coincidence!

    If you ever want some advice about dealing with local health and social services, or care companies and such things, just send me a message. We have ten years of experience with this kind of thing! (Although primarily in Sunderland)

    Matt

  10. #10
    Forum Member Ellie's Avatar
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    Hi Matt and welcome.

    I cannot imagine how frustrating it must be not to have a diagnosis after all these years...

    Does your mum attend an MND Clinic? ALS has obviously been ruled out due to no involvement of lower motor neurons, hence a "default" PLS diagnosis. Yes, PLS is a slow progressive MND, if that is what she has, she'd be on the quicker end of the progression spectrum, given her level of disability.

    I'm sorry her care agency isn't great (I can identify with that issue myself!!) Does mum have access to a Social Worker? They can be good at co-ordinating different parties and taking the onus off you to do everything. Or a Community Nurse?

    If mum could stabilise her neck and head with a good collar/brace (I use the Sheffield Snood) she should find it easier to use eyegaze. What eyegaze system does she use? You said it's a "camera" - is it Cameramouse? Infrared hardware, especially the new generation ones, are much more responsive and forgiving, as well as cheap!

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

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