PSP THE NEXT STEPS

[jillannf6]

HI ALL

I HAVE BEEN WONDERING WHY THERE ARE NO NEW TRIALS FOR PSP POSSIBLE CURES

HAVEE I MISSED SOMETHING ALONG THE WAY?

I ONLY SEE MY NEURO ABOUT EVERY 12 MONTHS AND HE NEVE R SUGGESTS THAT THER E MIGHT BE A NEW TRIAL OF ANYTHING......

SO IS THE USA ANY DIFFERENT RO AUSTRALIA PERHAPS:

LOL JILL

HUGS AND X XX TO YOU ALL

[Heady]

Hi Jill

Totally agree with you! You would think with such a rare disease, that every sufferer would be bombarded with at least some questions about how, why and when their symptoms first started. S has never been asked one question about the past. Much less, would he be interested in taking part in any trials! It's just take this pill to stop that symptom! But then, nobody has even bothered to sit him down to explain what's wrong. Thank goodness for Google and this site, we would be totally in the dark without them! How people who don't go on the computer are coping, i dread to think. I expect I would have been carted off in a white jacket by now!!!!

Lots of love

Heady

[loppylugs5 in reply to Heady]

Hi everyone,This will not help us but we have both requested that our brain tissue be given to Queen sq. Brain Bank on our deaths. Tel no. 020 7837 8370 (London) Maybe they can find a reason and a cure that way.They need normal and PSP volunteers.Here in UK all medical staff seem to be pushed for time if I have had a question I do get an answer but it is thinking at the time is difficult,and more so for Des.Very glad can come on here and see others experiences and know we are not alone.Love to you all,Px

[jillannf6 in reply to loppylugs5]

h

i hav e done this too in the event of my death my brain will go to the queens bank sq in London

thanks for that loppylugs

lol jill

[jillannf6 in reply to Heady]

HI HEADY]

HOW R U TODAY?

THANKS FOR YOUR REPLY ABOUT THE RESEARCH OR LACK FO IT HER EINTHE UK

I KNOW THAT THE PSPA ARE DOING ASMUCH ASTHEY CAN BTU SINCEDAVUNETIDE WE HAVE HEARD NOTHING ATALL

LOLJILLL

[Heady in reply to jillannf6]

Hi Jill, I'm well. S is very tired, with all my family problems, poor love has been dragged around, while my sister and I try sort out social services etc.

Still, come Tuesday, we are off to South Africa for six weeks. PSP is not invited and I am certainly not packing for it, if it demands to come, then it can pack its own bags and pay for its own ticket!!! Both S and I need some time off!

Look after yourself.

Lots of love

Heady

[jillannf6 in reply to Heady]

HA VE AGREAT TRIP TO S AFRICA HEADY

YOU DESERVE IT AND SO DOES S

LOL JILL

[Heady in reply to jillannf6]

Thanks Jill

[kryste]

Aunt Bev and I are getting ready to go to UCSF in San Fransico she will be trying an experimental drug ( meaning its not approved by the FDA ) its called TPI-287, it has not been tried on humans it is not avalible out side the research if you have an email I will mail you all the steps and test we will be going through. What is a TRIASS? her neuro would not mention any new trials either i just searched and searched on the internet. If you would like me to send you a copy of the research study email me at [e-mail]

Kryste

[Tz2388 in reply to kryste]

Thank you for doing this. All we keep hearing is, "it's an orphan disease, not enough folks have it to bring in funding." Other rare diseases are out there in the same situation.

[Joandbear in reply to kryste]

Please post results. When do trials start. We are in AlbuquerqueNM and are very interested. We can only hope that the SF trials are successful our prayers are with you.

[kryste in reply to Joandbear]

I sure will I will let you all know everything iI know we are all waiting for just something positive from anywhere thanks for the prayers. It should be soon

[Joandbear in reply to kryste]

Please post results. When do trials start. We are in AlbuquerqueNM and are very interested. We can only hope that the SF trials are successful our prayers are with you.

[jillannf6 in reply to kryste]

hi kryste

thanks f or tha info

i will email you if i can get you address right!

lol Jill

[kryste in reply to jillannf6]

When I emailed him today I told him she should be getting some emails and phone calls in hopes that he can lead you somewhere close or even here in the US we could go on the buddy system.

[kryste]

P.S. I also got a letter saying that they were awared 49 million for research not to long ago. We are here in the US in Reno, NV and trust me no one knows anything about PSP or is working on it except at UCSF its like other than them no one gives a shit. Sorry about the laungage.

[Joandbear in reply to kryste]

Wow$49 million, I had heard it was $29 million. I like your amount much better..

[kryste in reply to Joandbear]

ok i was tired as long as it is some where in between those two # that would be great.

[jillannf6]

ahnks for yoru replie sso far

i hope the trial goes well 4 your auntie Bev

;lol jill

[jillannf6 in reply to jillannf6]

and it would be great if some positive news came out of it

lol jill

[jillannf6]

hi

i have done th e same thing - when i die my brain is going to the queens bank in ~London for research

many thanks for that loppylugs

jill and a

[puyella]

hi jill well next week on weds I will go and see my specialist I will certainly ask him why there is no research being done I expect the usual cry there is not enough money but if there is a war they would bloody find some quick enough I feel like I have been put an orphanage and forgotten about just going to bed so will not stir myself up to much mate goodnight to you and all psp people and carers take care everyone of you peter jones queensland Australia

psp sufferer

[kryste in reply to puyella]

I wont for get you none of you

[jillannf6 in reply to puyella]

pet er jones

did you ge t 2 see your guy last week and what did he say about research|

lol jill

[kryste]

I hope it helps to, I will keep you guys posted every trip down there I refuse to give up and I keep her fisty as I can shes not willing to give up yet either I just keep telling her something new comes along everyday she cant wait to get better so she can kick my ass I got that coming shes so funny LOL

[jillannf6 in reply to kryste]

it is great that your aunt is so upbeat

and SASSY about life!

i am much the same on this site but my partner says i am fallihg over all the item and i should be in a home (my eating habits a re poor too i tend to eat

v fast as fi every meal were my last but i cannot slow down with it at all........)

lol jill

[kryste in reply to jillannf6]

You might as well come live with us you sound like you would fit right in and we would have a ball

[jillannf6 in reply to kryste]

hI KRYSTE

I absolutely `ADOREd SF((AND CALFORNIA) ON THE OCCASIONS WHEN I VIISITED -EVERYONE WAS SO UPBEAT AND IT WAS MY KIND OF THING -HORRIBLE COMING BACK 2 THE UK WHERE EVERYONE SEEMED SO "DRAB"

BUT YOU HAVE ENOUGH WIHT YOUR AUNT TO WANT ME AS WELL

LOL JILL

HUGS ANDXXXX= 2 YOU AND YR AUNT BEV

[kryste in reply to jillannf6]

Yea SF is a lot of fun and so is NV I love playing in the slot tournments I take Aunt Bev even though her movement is slow boy when it came to the time to beat me at something you wouldn't believe how fast that hand moved I couldnt beleive it so funny

[jillannf6 in reply to kryste]

yes your aunt bev is surely a person to be reckoned with

i would love her i am sure

lol JIll

hugs and xx x to you both

[jillannf6 in reply to jillannf6]

what i meant to say=is that i am crying a lot when he shouts at me for falling - saying it is unnecessary etc etc when i am doing my best not to fall at all but it must be well over 2 year s now since i had a day without any falls at all -..

but hey ho i am still he re upright a lot of the time apart fm when i am flat on my face or my back

so the tears are not needed at all but they are tears of frustration / sadness / as i cannot shout back at him (my voice is now too weak to do that)

there i have had a rant now and feel a bit better for it

lol Jill

[jillannf6]

BUT NEVER BEEN TO SAN RENO OR NEVADA !

[goldcap]

Jill I don't know where you are located but there is a new study in San Diego California.

[jillannf6 in reply to goldcap]

i m in thE UK gold cap so not a lot going on here

apar t fm a new study by D R JAME S ROWE IN CAMBRIDGE to find out early sufferers of this PSP

LOL JILL

[jillannf6]

hi i am in the UK

LOLJILL

[kryste in reply to jillannf6]

Well jill get on a plane and get signed up I am a hot mess but a lot of fun so aunt bev its gives hope and makes you fill a little better LOL

[Lieve]

Just wanted to say, any research news or new developments, please post - I will see what's going on over here (Belgium). And otherwise, sending you all my love. and JILL, YOU ARE A TROOPER (all in CAPS just for you - my dad does the same lol). Another sunrise, another day... xxx

[jillannf6]

thanks lieve

i am not a trooper jus ta person trying to do my nbit for PSP and all the carers alike

lol JIll

[laila123]

i have been puting things on here but nobody seems to anser does this sight excist

[jillannf6 in reply to laila123]

hi laila123

ye sthe site is here and w eco exist

lol jill

:_)

[jillannf6]

do exist!

loljIll