UCSF final part of study: Hi everyone hope... - PSP Association

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UCSF final part of study


Hi everyone hope all is well sorry been crazy for me try to pop in when I get 5 min. Just an update on a few things. We are soposed to go back to UCSF Feb. 1,2, and 3 for Bevs final trip for this research project hopefully we can make it she is in hospital with phanomia in one lung seems to be doing ok with this antibotic (sorry my spelling sucks) I thought her body was shutting down but again she snaps out of it , Doc she should be ok , coughing that shit up is what is hard for her her saliva is so long and ropey I scoop it out with a sponge stick and still is a job to get out of her mouth

Still working on the contamination Our hair samples got lost some how so I redid them today should take about two weeks lets hope sure hope I can make a connection with the waste coming from accross the street and with the methelmercury now that would be amazing, had to leave the hospital and come home for a while already ater 2 days got them all giving me dirty looks I do not know what part of she likes to shit in the comode not in a bed pan they did not get guess they were just a couple of p----s I told them she will hold it , they did not lesson so took it upon my self to do it , the roomate was a bitch did not like the moaning and was being snoty , so she did not last long with me , Aunt Bev is no different than any of them and I am going to do what ever it takes to make sure she is comfortable and ok , I try to be understanding and sweet but dont make her feel any kind of way or ill kick your ass she has feeling to. Sorry just got a little sideways, she is getting progressively worse , but there is nothing wrong with her memory and brain she knows everything that is being said and going on she still does not miss a thing, and she can hear you talking. Ok

put a lift on the back of the truck to get her in and out because she can no longer help me stand I sure hope there is someone not to far away that can use all this stuff when her time comes I know first hand how hard it is to do with out things to make it easier on you Her electric wheelchair is amazing for an out doors person because it folds out into a bed has 4 speeds and is fast, dont know why I am rambling guess just worried I totaly lost what I was talking about in the begining of this post so I will write with an update

Lots of hugs from us


12 Replies

Hope aunt Bev recoverers soon. Love and hugs maddy x

Oh, Kryste, you are a warrior! Your aunt is so lucky to have you in her corner. I hope you can get a bit of rest somehow while she is recovering. Don't forget to take care of yourself while you are busy looking after everyone else!

kryste in reply to easterncedar

Thanks I will I hope things are ok for you. Keep smiling and keep your head up.

Lots of hugs Kryste

Good luck with the testing. Your Aunt is lucky to have you on her side....Remember people in hospeitals are not at their best...that goes for the people visiting them!

Have you tried a suction machine...I thought you had...it works wonders for my husband...You did lose me at the hair sample and methylmercury thing...Is that what your tests are about at UCSF?

Get some rest,


kryste in reply to abirke

Hi yes I just got her a suction machine it works wonders for her I know they work hard and I did say sorry and you are right I could use a little rest my friend is sitting with Bev for me tonight. The hair analysis to see what VOA and Heavy metals are in her body there is small amounts of a chemical in her well and the neighbors that have the same effects that PSP they just never seen anyone with long term exposure and in 1995 this was demed the Comstock Superfund site where all the mines used mercury to get the silver and all 250 mines run off runs into the lake infront of our house but they never did anything about it down graded it to a high risk even though the pelicans were dying off. I want to see what is in there system when I say their our neighbor was also diagnosed with Parkins, but looks more like what my Aunt Bev has I am just hoping we can get some kind of answer to the cause of their symtoms. UCSF she has been going down for testing on the progression of PSP in hopes they might find a way to slow it down, Then when she passes we will donate her brain for research. Anything to help someone who has this sad sickness.

Lots of hugs





jillannf6 in reply to jillannf6

hope be vis well soon#

lol jill

are you in s.f. been looking for someone to talk to. love, alice

kryste in reply to aicebeall

we will be on Feb 1,2,3,

we will be on Feb 1,2,3, are you in SF

hugs Kryste

aicebeall in reply to kryste

not in sf but can take a call or my daughter who is in sf. love, alice

kryste in reply to aicebeall

That would be great its always nice to talk to some one who is going through the same thing

Hugs kryste

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