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Thread: MND and Parkinson's

  1. #1
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    MND and Parkinson's

    Hi all
    I went to my neurologist ,she noticed I don't blink much and I can't break my stare at times.
    She told that a sign of Parkinson (. Masked face. ) she sent me for a dopamine scan. I don't know how I done it, I had to lay flat for 45 minutes, I found it difficult to breathe and Mel sat by my side handing me the suction machine every two minutes otherwise i would choke. I saw my neurologist to get my results. I have loss of dopamine on both sides of my brain.
    Which confirms a form of Parkinson's , an overlap. She given me a new drug which may help some of my symptoms in my face, she explained it's harder to treat when it's a crossover rather Parkinson's only. I have to build the doses up over a month otherwise they will me sick.
    Has anyone know about crossovers? She fitted me in, so I couldn't ask all the questions I wanted.
    Mags xx

  2. #2
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    I'm sorry to hear that Mags.

    Some people with ALS do get dopamine depletion, but I've know idea how this differs from an ALS Parkinson's crossover - sorry!

    I also can't break my stare about once a day, but don't have a problem blinking. My eyes are hard to open if I'm lying down, no problem if I'm sitting up.

    Having a face unable to express physical emotions such as frowning, grimacing, smiling etc is normal for us with ALS/MND - on the plus side, I've no wrinkles just perfectly saggy muscles!

    My Neuro says optic muscles can be affected, albeit usually in late-stage ALS - yep, that's me! but tends not to be to the same degree as other muscles.

    Sorry I've no pearls of wisdom for you Mags. Hope the meds work well for you.

    Take care,
    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  3. #3
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    Hi, Ellie,
    Your the same as me. I can't open my Eyes while laying down. I don't have any wrinkles on my face.
    Are you saying masked face comes Mnd on its own? My neurologist says i have non typical symptoms, that's why she took 18 months to diagnose me. But I read on the forum some people have 'my non typical,symptoms'.
    How are you?
    Mags xx

  4. #4
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    I never heard that "masked face" term before Mags. In ALS/MND muscles weaken and atrophy so when this happens to our facial muscles, we are unable to make facial expressions and it does tend to be worse in Bulbar onset and PBP. I don't know if that's what happening to you, or if there is some Parkinson's traits too.

    I think I can smile, but when I look in a mirror, my face is almost devoid of expression!! Oh well... inside I'm smiling

    Am keeping well, thanks. Busy buying school uniforms atm. Normally it's done in July, but I was otherwise engaged last month and couldn't see the kids' old uniforms on them - they wouldn't do a catwalk performance in the nursing home for me

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  5. #5
    Forum Member Terry's Avatar
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    Hi Mags;

    I too sometimes can't open my eye's for a while when laying down and probably hold my stare longer than is normal. I think the reason for holding the stare is that my reactions and perceptions are both a bit slower than normal people.

    My facial expressions are poor but most can recognize a smile or maybe just my laughter.

    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 keeps 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.

  6. #6
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    Hi Ellie and TC
    If I have no change in a couple of weeks I will abandon the drugs. My friend who has MND ,same neurologist sent her for a dopamine scan and she has got dopamine defiency on one side. I'm confused. I don't think the drugs will make any difference but I will be nuts if I don't try them. I can smile when I'm not trying and it's over exaggerated. I can't smile when I need too. When I'm out in my wheelchair, people smile at me, I can't smile back. I bet they think I'm a miserable c**. I'm far from it.
    Ellie, you may get school uniform in the sale when you get it late. There was a sale in Debenhams for uniform today.
    I better end now, Mel is waiting for me to something.
    Mags xx

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