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Thread: Mum with MND

  1. #11
    Forum Member Terry's Avatar
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    Hi Roo and welcome to the forum;

    I take longer to process things, guess it takes a couple of seconds to move my head and then I have to make sure I am not going to chock by swallowing sometimes which could take a minute. I also have to think about breathing, these are all things that just happen normally in normal people. I have to use brain power to sort these out and other things as well. Also not being able to do much or write notes, I forget things. Normal people just do it or make a note.

    Your mum can be tested for the most likely Mnd genes, to see if see has any of the known ones that could be passed on.

    Love Terry
    Last edited by Terry; 6th June 2019 at 16:14.
    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.

  2. #12
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Roo,

    Sorry to hear your mum gets little help from the hospice.

    Following on from Barry's post: The next time the MND Nurse / specialist visits her at home, a cognitive, behavioral and executive function evaluation can be done - it's not as daunting as it sounds!! Your mum will do some memory tests, language skills and answer some questions.

    It will be good to know if she is struggling because of changes in executive and cognitive function caused by the ALS/MND or as a consequence of its symptoms such as poor breathing which can cause confusion, or sheer fatigue.

    Re Parkinson's and ALS/MND: There are links between the two diseases on a molecular level and cetain genes, such as SOD1, are involved in both PD & ALS, but I don't think thee research has gone so far as to prove a direct genetic link.
    Certainly there are people who are unfortunate enough to be diagnosed with both PD & ALS/MND (including a past Forum member) Given that your mum's doctor isn't interested, IDK if her brother would want to pursue the genetic theory??

    Re liquid baclofen: I used it for a while and the stuff was so thick and sticky that we had a few syringe -> feeding tube explosions which spewed the suspension far and wide and was a nightmare to clean up We reverted back to crushing tablets!!

    Hope you're doing OK yourself?

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

  3. #13
    Forum Member
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    May 2019
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    Thanks for all of your words of wisdom, it really does help!

    Ellie - with regards to Baclofen, mum was given what the GP prescribed as liquid Baclofen and it was a thick treacle like substance that stood no real chance of going through the PEG no matter how much we watered it down, mixed it etc. Mum stood more chance of hypernatremia with all the water (lol) but when we mentioned this to the MND specialist he said that the thick stuff was a cheaper version and she now has the actual liquid Baclofen and that goes through no problem! (Worth exploring if you were better on Baclofen). The problem we are having now is with liquid lansoprazole (mum has GAVE syndrome also (aka watermelon stomach) as the liquid version of this has little balls in that I assume is a slow release - and these get stuck on the PEG - anyone else on liquid lansoprazole and has this problem? Or any suggestions?

    Xxx

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