hi everyone

got computer duct tape togather dont know how long it will stay hope all is well with evryone, aunt bev and i leae for UCSF friday she starts her observational part of the research monday we will be there a week 23-27 please list any thing u can think of question,whys,anything u can so when we meet with the team of docs we can give them something to look at or at least gt them thinking so we can find a cure for this terribe PSP thank u they say they have wifi so i will keep u posted on wha they say and doing

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  • GOOD LUCK WITH YOUR TRIP-- I DO HOPE THAT YOU HAVE A PROFITABLE TIME THERE FOR ALL OUR SAKES

    DO POST WHEN YOU CAN//... AND IF I CAN THINK OF ANYTHING TO ASK I WILL LET YOU KNOW

    LOVE FROM SHARON

  • Thanks Sharon I hope everything goes ok too just got a laptop for Bev we are taking it with us and will keep you posted

    love kryste

  • It sounds as if you have an interesting week ahead of you. I hope you both find it very worthwhile and that what they find during that week, helps all those who are suffering now and maybe go towards finding out how to prevent it. It is a good thing you are both doing.

    Best wishes.

  • Bladder problems are driving me mad at the moment, over active bladder, plus can't get there in time, as he only given a few seconds notice!!! Especially at night.

    Best of luck. Keep us all informed.

    Lots of love

    Heady

  • Like Heady I find myself bladder obsessed. Just woke to wet bed, pool on floor and dry nappies removed at some point during the night. For months I have threatened to duct tape C into a black bin bag overnight and may end up actually doing it. If there could be some way to handle the incontinence my life would be so much better. Still sun I shining and set for the week so laundry will be much easier.

  • Anything that could lead to hope is terribly important,looking at the length of this illness what causes the different duration timelines,one must think that the blocking of the channels caused my tau clumps must occur at different times for different people...good -luck,Rollie

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