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  • nunhead_man
    replied
    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

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  • Ellie
    replied
    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.

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  • Lynne K
    replied
    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

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  • nunhead_man
    replied
    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; 9 August 2019, 16:19. Reason: typos!

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  • Ellie
    replied
    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.

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  • Ellie
    replied
    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.

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  • nunhead_man
    replied
    Good morning Ellie

    Originally posted by Ellie View Post
    Hmmm, not ideal.....
    Thank you again for such a detailed reply - I take a note of all this, so may come back to it.

    I say that because the Tech (technician) who came from the NHS service I mentioned above with the occupational therapist pointed out that given I had the advanced version of the voice dictation software (Dragon) there is a voice control option of the screen with some really quite sophisticated features.

    The tech came from Specialist Equipment Service, Kent and Medway NHS and Social Care Partnership Trust, Disablement Services Centre, Medway Maritime Hospital. They emphasised I did not have to pay for any equipment I needed, and they would supply e.g. a head camera, as opposed to an eye gaze system when the time came.

    I suspect, although I do not know that I may lose more of the function of my hands before I loose my voice, so they have left me to play and will come back to me in a couple of months to see what has developed - I suspect, given the speed of my development I may need a longer interval than that.

    As an aside, I do notice that medical professionals in general seem to be more used to people with a much faster progression than I seem to have and so, for example, set review dates that are to short in interval.

    Whilst thinking about this, I also have a neurologist who worries about me losing weight (I am over desirable BMI) because, it turns out he worries that when I need a peg I will need that extra weight whilst I adjust. That is all very well, but not very helpful if I die of a heart attack in the meantime!

    There is no MND in my family , but there are certainly heart attacks and strokes - because stroke is 40% genetic where as MND is 10%!

    Warmly
    Last edited by nunhead_man; 27 July 2019, 11:11. Reason: more info

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  • Ellie
    replied
    Originally posted by nunhead_man View Post

    No it is not a touchscreen - I am using it on a PC monitor - look for HP ZR24W - which has a flat bezel but has controls for the screen on the right-hand side which means I cannot mount the eye gaze device centrally
    Hmmm, not ideal but worth trying to find a way to mount it centrally, allowing for those right side buttons by building some sort of buffer?

    Originally posted by nunheead_man View Post

    The software is the Tobii supplied eye gaze software
    That software is just the Tobii drivers and eyechip, not the 'mouse' - you need to use either Windows 10 native eye control (beta) - search in settings or an open source program. The best one by far is in GitHub - search for Masta Lomaster bkb and scroll down for English version. Don't be put off by the Russian part, the guy is a true gem, as well as a genius. I've used it for years without issue. It's really stable.

    Originally posted by nunheead_man View Post

    I am not sure what you mean by using a powered external USB drive for the 4C - the device I have simply plugs into a USB port on my workstation?
    Yes, it is a plug in USB2.0 but there have been some stability issues, which I read about on a tech forum when I had issues and the remedy is to use a powered USB drive to isolate it from the PC, at least sometimes.

    Hope you manage to find a way to attach the eye tracker onto the monitor, use some mouse emulating software and Bob's your uncle!!

    Love Ellie.

    Leave a comment:


  • nunhead_man
    replied
    Hi Lynne

    Originally posted by Lynne K View Post
    Not trying to influence you Andy. Services are great in Bury, Radcliffe, Whitefield etc Our services have recently won the contract for Salford Royal so they must be doing something right
    Thank you for the information and also you Ellie in relation to Sheffield - it was already on our list.

    We have a hesitation in that my model for moving in later years was that of a father of one of my friends at university, who was an ambulance man. He, when I first knew him had the deputy controller's job in Hertfordshire and as he was a sailor, he decided he wanted his final job to be service controller's job in either Somerset Devon or Cornwall as the sailing is good there especially on the South coast.

    So he got the Cornwall job and spend his last working years creating a space for himself in the community so that when he retired he had his work friends to rely on, as well as those he had already made in the local village and in the sailing club.

    This led to my first fundraising consultancy job - for the Cornwall First Air Ambulance

    In general, moving after you finished work seems to be a mistake as you become quite isolated if you are not very careful.

    But hey - when economics and health drive.....

    Leave a comment:


  • nunhead_man
    replied
    Hi Ellie,

    No it is not a touchscreen - I am using it on a PC monitor - look for HP ZR24W - which has a flat bezel but has controls for the screen on the right-hand side which means I cannot mount the eye gaze device centrally

    It calibrates okay but then does not seem to work

    The software is the Tobii supplied eye gaze software

    I am not sure what you mean by using a powered external USB drive for the 4C - the device I have simply plugs into a USB port on my workstation?

    Warmly

    Leave a comment:


  • Lynne K
    replied
    Not trying to influence you Andy. Services are great in Bury, Radcliffe, Whitefield etc Our services have recently won the contract for Salford Royal so they must be doing something right
    Good luck. Lynne

    Leave a comment:


  • Ellie
    replied
    Originally posted by nunhead_man View Post

    On that front, given I get excellent service from Kings and the support team in Lewisham locally. Where else might I get a similar level of care?

    Would Sheffield be an option for example?
    Excellent point Andy - if you're thinking of relocating, you need to know what MND services will be available to you before moving.

    I know folk here are well looked after in the Sheffield MND Care Centre, but don't know about community services.

    There are people here from all over England, attending Sheffield, Cambridge, Nottingham, Northamptom, Salford MND Care Centres to name but a few outside London. Hopefully you'll get some useful feedback on community services too. (can't imagine Kirstie & Phil doing that for you )

    Good luck.

    Love Ellie.

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  • Ellie
    replied
    Originally posted by nunhead_man View Post

    I picked up 1 of the Tobii units but I am having trouble getting on with it - the physical unit does not stick to my current screen very well and perhaps because of that the software does not work very well.
    Is it a touchscreen? The adhesive on the magnetic strips won't stick to a touchscreen surface. If I use the 4C with a tablet, I use BluTack, or similar, to hold it in place as it's only for temporary use.

    My previous laptop didn't have enough of a bevelled edge for the magnetic strips, so I used those peel off picture hanging tabs and raised the tracker with BluTack to ensure a good position for calibration - improvisation is an essential talent in this game The magnetic strips work perfectly on my current laptop.

    Is it calibrating well?

    What software are you using?

    Love Ellie.

    PS Andy, it's best to use a powered external USB drive for the 4C, even at least some of the time.
    Last edited by Ellie; 22 July 2019, 14:54.

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  • nunhead_man
    replied
    Good morning Ellie

    Originally posted by Ellie View Post
    Take Part in...You never know!!!
    Thank you - I think DIY SOS is probably not sensible given our occupational therapist's and architects advice that is simply not possible to fit a big enough footprint on the ground floor if I ever need a powered wheelchair.

    But I have tried Location, Location and Location.

    On that front, given I get excellent service from Kings and the support team in Lewisham locally. Where else might I get a similar level of care?

    Would Sheffield be an option for example?

    Leave a comment:


  • nunhead_man
    replied
    Hi Ellie

    Originally posted by Ellie View Post
    May I ask Andy if you got/are getting a Tobii 4C? Or a different one?

    And "the experts" - are they AAT, techie mates or paid IT pros?
    I picked up 1 of the Tobii units but I am having trouble getting on with it - the physical unit does not stick to my current screen very well and perhaps because of that the software does not work very well.

    I spoke to the Smartbox team at the MND Association AGM and they suggested Alea?

    As to my experts, it is partly just me experimenting, but also I have support from....

    Senior Practitioner, Specialist Equipment Service
    Kent and Medway NHS and Social Care Partnership Trust
    Disablement Services Centre
    Medway Maritime Hospital

    Warmly

    Leave a comment:

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