SF update

Hi everyone sorry took so long to write, I have been just beyond tired. But here are some of the things Aunt Bev Has been doing


Cognitive Testingm, blood work Spatial Cognition Testing , MRI Retinal Imaging.


Cognitive Testing ll, Cogntrive Testing lll, nurse interview, Family History (do not think bevs is from genes) Neurological exam


Blood and urine testing (going to do a gealogical testing) , Lumbar Puncture, Eye Movement testing, Cognitive Testing lV, Social Function testing, and then we had a Family meeting with all the doctors

they think she qualify for a few clinical trials, and also testing and research to find out what protine she is missing, Tomarrow we go to UC Berkely to do Emotions testing for 7 hours, and then report to UCSF hospital to do a 24 hour sleep studie and that will complete the first round we also signed papers to donate her brain when she passes doc was really impressed on how well she does for having PSP for so long but says he does not believe it is genetic, I am going to hit the bed to tired to write any more talk to you all soon hope all is well with all of you I also gave them the name of the site we all are at and told them to check in on us to see what is really going on with PSP and give them so other direction to look at with the writings you do everyday in hopes that it can give different things to look at g

good night sleep with the angels

12 Replies

  • Whew! Sounds exhausting but well worth it for all of us. Thank your Aunt Bev for what she is doing for the good of all PSP sufferers. I hope she is coping with it all. You are doing a brilliant job helping her to do this. You have completed the form to donate your Aunt's brain when the time comes but did they ask for yours as well. Here in the UK they want brains from PSP sufferers but also from those unaffected so they have something to compare them with and see what changes have taken place. We registered very soon after diagnosis. On our next visit to the neurologist he said he had a very difficult request but it was his duty to ask. I said are you going to ask us to donate our brains because if you are, we have already registered. He laughed and said that was the easiest conversation he had ever had about it.

    I hope you both had a good sleep and have awoken refreshed ready for another busy day.

  • No I havent but I will look in to it even though there is a few screws loose im not sure anyone would want this mess but will do it thanks for suggesting it we tried to do a stress test on stress on caregivers but Aunt Bev was to sore form the lumbad pucture

    hugs kryste

  • Wow! Thanks for posting, I know you're exhausted! My husband and I will be going to Alabama for the same study. They have yet to set up the appointment but I am told that will begin next month. Best wishes for you. . vsm0001

  • It is hard on the person with PSP but so well worth it they were so grateful and kind to Aunt Bev and I hope all goes well for you and your husband hope you are given some hope like we were its not over and never stop fighting.

    Love and huggs kryste

  • Well Done for suggesting that they read these sort of sites. I bet half the professionals haven't a clue what we all go through on a daily basis. All they see, is a patient on best behaviour that has got some adrenalin flowing through their veins and being stimulated by the hospital visit, so a lot of the problems are a "figment of our imagination!!!" Well that's according to my darling husband!

    Bev must be exhausted after all she has been through. Tell her thanks very much on behalf of us all, let's hope it does some good.

    Lots of love


  • hi\

    wonderful stuff which you and your aunt bev are doing 4 us all

    lumber puncture s are not pleasant anyway and it is a complete barrage of tests

    lo lill

  • Well done, Kryste and aunt Bev!

    All good wishes,


  • that's brilliant well done xx

  • Yikes! I can't help wishing she wasn't having a lumbar puncture. Sending her love and hugs x




  • How are you doing finally caught up on some sleep had to put Aunt Bev in hosp for a few days again when we got back stupid UTI again shes home now sleeping


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