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Thread: New Member

  1. #1
    Forum Member
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    New Member

    Hello. I am Dr Rick and I have Primary Lateral Sclerosis. I was a plant biologist and university entrance biology teacher in another life and worked for the last ten years of my career for Cambridge University. When I was first diagnosed I was told that cognitive changes were not a feature of PLS, well I can tell you they have changed their minds and I am one of the 35% or so of people who have significant cognitive and memory problems and emotional lability (I cry about everything!). I first started having symptoms in 2010 and retired in 2013 after I started having falls which is not good if you work in a laboratory. It took me until November 2018 to get a diagnosis during which time I saw just about every single neurologist at my local hospital but as I also have post traumatic stress disorder and I'm on the autistic spectrum they would not believe there was a serious cause to my symptoms until I saw a very wonderful doctor in A and E (I can't remember why I was there) who insisted that I see a particular professor of neurology who did a lot of tests and said 'You, my friend, have a serious neurological condition. You are not and never have been making it up' I wept a lot at that point. It took a while longer to eliminate all the other possibilities like hereditary spastic paraparesis but I've been settled on my current diagnosis for a couple of years now and I don't think it will change. I try and keep myself busy, painting using the computer to turn photos into paintings, reading children's books and science fiction, and trying to help in development of text to speech apps and eye-gaze and head movement detection for text to speech apps. I'm tired now so I'm going to stop, Rick

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Dr Rick. Welcome to the forums. Sounds like you still work hard despite your neurological problems. I'm tired too so chat another time. 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.

  3. #3
    Forum Member Terry's Avatar
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    Hi Rick and welcome to the forum;

    Sorry to hear of your diagnoses, the length or time to get diagnosed and your other problems to.

    It's good to hear you are helping develop things to improve things for us and please give us more details when you are able.

    Please feel free to ask any questions or just share things with us.

    Best wishes, 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.

  4. #4
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Rick and welcome to the Forum.

    Sorry you were misinformed re emotional lability (EL) (also known as PBA) and cognitive & behavioural changes not affecting those with PLS - as you unfortunately found out, it does.

    If you aren't aware, many people find that taking an antidepressant helps reduce the crying and/or laughing episodes of EL, if you find it problematic.

    Take care.

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

  5. #5
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    Hi Rick

    I'd like to add to the welcome. You're definitely getting it harder than a lot of us I'd imagine. Hopefully you have family and friends to support you with all of this. Personally I'd be lost without my family. Chat to you soon.

    Mick.

  6. #6
    Forum Member Gillette's Avatar
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    Hi Rick and welcome to the forum no-one wants to need.

    Thank you for the work you are doing to develop apps that can be used by MND sufferers and others. As I'm sure you will have seen, this is a lively and supportive forum. Feel free to ask questions, provide answers and just ramble on.
    Dina


    Trying to keep positive, but not always managing.

  7. #7
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    Thank you all. I'm off to day therapy at my local hospice today but when I have recovered from that I'll have a think about the best way of passing on my findings about test to speech apps. If your local hospice offers day therapy, I thoroughly recommend it. I get up to an hour on a passive exercise machine so I can pretend I am still on my beloved bicycle, I also get arms and legs massaged with essential oils which is a great deal more pleasant than I thought before I tried it. There are lots of art activities or you can just chill out with a newspaper and a cup of tea. There are often quizzes and other group activities and I have made a lot of friends among the staff and the clients. Definitely a brilliant day out.

  8. #8
    Forum Member Gillette's Avatar
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    Hi Dr Rick

    Thank you for mentioning the hospice day service: itís reminded me to ask for a referral.

    Enjoy your day!
    Dina


    Trying to keep positive, but not always managing.

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