PSP Care

[agustintp]

Hi everyone, Do you know the steps for PSP illness? Times and symptoms?

I think that there are many process but i don´t know them.

Thanks in advance,

[easterncedar]

I'm very sorry, but that is not an easy question, as the disease affects everyone differently. It matters a great deal whether the patient has the psp-r or psp-p variant, for one thing. The median life expectancy currently is 7 years from diagnosis, but that statistic is skewed by the fact that many people spend years being treated for Parkinson's disease.

Are you the patient or are you caring for someone with psp? Where are you in the process now? Getting the diagnosis was a big shock for us, and I had to do a lot of searching on the Internet to get an idea of what we faced. This site has been the best source of help. My sweetheart was diagnosed more than 5 years ago.

The falling, difficulty swallowing and loss of communication are major problems for almost everyone. If you can get speech and physical therapists involved, they can help maintain function. Look for LSVT Big and Loud training.

If you have specific concerns, you can always ask. Someone here will be going through or have gone through it. And as we are all around the world, someone is almost sure to be awake when you are! You can also use the search function. It's very good for directing you to answers to common questions.

Best wishes, Easterncedar

[Kevin_1]

Hi

Easterncedar says it all realy.

Here is a link to download an article by Professor Huw Morris. He is a specialist in PSP etc at an international centre of excellence.

The donwnload is from my own Dropbox and so it is safe.

dropbox.com/s/jnq67vqiu33px...

You don't have to sign up. Scroll down a little and select download.

Best wishes

Kevin

PS - Dropbox seems to have changed. It might just open on your screen.

[Yvonneandgeorge in reply to Kevin_1]

Kevin it won't open x

[Kevin_1 in reply to Yvonneandgeorge]

Hi

That's odd it works for me.

Trying again:

dropbox.com/s/jnq67vqiu33px...

Any better?

Cheers

Kevin

x

[doglington in reply to Kevin_1]

Thanks . Its worked for me. Jean x

[Yvonneandgeorge in reply to Kevin_1]

Yes thank you Kevin. Proffesor Morris is a fantastic doctor, he has always got time for his patients, we are under him, and doctor Lamb we are so lucky to have them look after George xxxxx. Anyone else under proffesor Morris? I think Liz is Kevin ?

[Kevin_1 in reply to Yvonneandgeorge]

Yes we are. Great Doctor.

[easterncedar]

Dear agustintp, I'm sorry, I had forgotten that you had written before about your mother, who had had many falls, and whose personality had changed a lot. It seemed the disease was progressing very quickly for her. What has happened lately?

[Christine47]

Here is a list of locations that have done some clinical trials in PSP. One may be a good source of information for you specific to your mother's condition. I got the list off of Clinicaltrials.gov. I refined my search and found there are many locations doing research in Spain in neurodegeneration and tauopathies, Perhaps they can direct you to a neurologist Hope this helps. Christine

Fundacion Clinic per a la Recerca Biomédica

Maria Jose Martí, Fundacion Clinic per a la Recerca Biomédica

Hospital de Cruces Barakaldo, Spain, 48902

Fundació Ace Barcelona, Spain, 08014

Dpto.neurologia. H. Clinic. Barcelona, Spain, 08036

Dpt. Neurologia. Hospital Ramón y Cajal. Madrid, Spain, 28034

Hospital U. La Paz Madrid, Spain, 28046

Hospital Puerta del Hierro Madrid, Spain, 28222

Hospital de Donostia San Sebastian, Spain, 20014

Hospital Mutua Terrassa Terrasa, Spain, 8221

Departement of Neurology, Hospital La Fe Valencia, Spain, 460009

[easterncedar in reply to Christine47]

Nice, Christine!

[PUTLAND]

How can u tell if it's psp.p or psp.r

[Christine47 in reply to PUTLAND]

This might help brainsupportnetwork.org/two...

Christine

[agustintp]

Thanks to everyone. It is nice to share experiences with all of you.

[agustintp]

My mother has PSP and she has problems to drink water. She close the mouth and she doesn´t want to drink. She´s starting with kidney´s troubles.

Do you have any answer for that?

I am very sad because it´s candle that it is blowing out everyday.

Thanks in advance for your comments,