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  1. #31
    Forum Member Ellie's Avatar
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    Thanks for that Andy.

    It's great that Dragon works well for you and hope it continues to do so for a long time.

    Of note: when the professionals imply that eye gaze systems are expensive, they are referring to the 'off the shelf' AAT products which, being for the captive, and normally funded, disabled market, are ridiculously expensive The Tobii 4C is a gaming product and needs free software to be installed, so it's not a plug in and play product, therefore unfortunately for the taxpayer, you won't get it provided by AAT services BUT it is substantially cheaper than the AAT products and superior as I can attest to, having used an integrated Tobii system. (That's what drove me to find an alternative and I found the Tobii gaming product and tried various free open source software before settling on the one referenced above)

    Head track cameras are cheap (much cheaper than an AAT provided eye gaze system) but they are nowhere near as accurate nor as fast as eye gaze.

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

  2. #32
    Forum Member Ellie's Avatar
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    PS Andy,. Forgot about the weight issue!

    A higher BMI is associated with a better prognosis in ALS, as long as you're not obese, which obvs you're not as the Neuro would have issues about the feeding tube procedure.

    If you haven't had your cholesterol levels measured recently, have your bloods done. If your bad cholesterol is high, you can lower that yourself with dietary changes and/or meds.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #33
    Forum Member nunhead_man's Avatar
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    Good afternoon Ellie

    Sorry to be so slow in coming back.

    Life has seemed to pass me by whilst I hunt for and try and keep the little work I have left going properly. Although there is more coming in.

    My most recent weight measurement was taken by the Biobank Reading team in July 2019 and they have me at a body mass of 32.8, although their automatic machine was not working which is about 20 kg over the recommended limit for my height - that is about 20% as it happens.

    However, other things are taking my mind off that being my aches and pains.

    I usually stand to work at my desk, have done for years, and recently my left hip started to hurt and am not quite sure whether that is just wear and tear from my lifetime use of it, or whether it is based in any way from the imbalance of some decaying muscles.

    In addition, after cycling on Tuesday I got lots of pains in my left shoulder which is the side of my upper body which is decaying so again I wonder if this is unbalanced muscles causing the problems.

    Finally, I think I may have mentioned the people at Kings when they were checking me out for a drug trial found an unusual heart rhythm and suggested I should get an echocardiogram - and I just had my appointment cancel with no notice when I am seeing a cardiologist on the 19th presumably look at that result - so all is not going well.

    Warmly
    Last edited by nunhead_man; 9th August 2019 at 16:19. Reason: typos!
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  4. #34
    Forum Member Lynne K's Avatar
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    I just read your message about your cancelled appointment Andy. Sorry to hear that. I hope that they sent or soon send you an alternative soon appointment. Good luck. 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.

  5. #35
    Forum Member Ellie's Avatar
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    Sorry to hear of your ailments Andy.

    Have you access to a physiotherapist through the MND Clinic or through community services?

    As our muscles weaken, the lose the ability to hold our joints in proper alignment, which causes pain. Also changes in our gait, however subtle, impacts on joints and muscles, all of which can explain your pain, in addition to the usual wear & tear/ageing process but an assessment by a physio will give the cause of pain.

    The physio should give you a range of exercises to help the affected muscles. If you use a private physiotherapist, they should have knowledge of neurological conditions and preferably not just be a sport injury focused, for example.

    I had, still have, issues with my shoulder blade caused by my weak muscles. I had nerve blocking injections which successfully treated the pain and although the pain has lessened significantly over time, I make sure to have plenty of massages and do ROM exercises to help manage the pain.

    I'm sorry about your ECG results and wish you well for the 19th - proof that we continue to be like 'normal people' and can develop other problems on top of MND, so we should not attribute every ailment to MND...

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

  6. #36
    Forum Member nunhead_man's Avatar
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    Thank you both for your comments.

    I will toddle along to the cardiologist on the 19th as arranged, show him the trace from the drug trial and see whether he wants more done.

    As to my aches and pains Ellie thank you that is a good suggestion.

    There are physios associated with the Kings neurology clinic who already helped me with sorting out the oedema in my left hand

    Warmly
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

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