PSP Association
5,307 members7,308 posts


I was diagnosed with PSP in March thi year, I have had bad fit like spasams and instabilety But although falling from chaires I have not fallen backward I have not lost any wate on the contry I have become overly heavy, I at times have sight broblems infact sore sight;

Sorry for my spelling I have been in France and forgotten a lot of English spellinng

7 Replies

Hi Stalbans

I fear it is going to be a long and eventful journey.

Stay on the site for advice, for all sorts of tips of how to cope, for many shoulders to cry on, get yourself as much care NOW as is available to you. Always think ahead and make all necessary plans for your care and well-being and always remember you are not on your own.


Dorothy T


I am so sorry for your diagnosis. I left a response to easterncedar on her coconut oil question that may give you things to think about as to what we are doing. My husband, also diagnosed in March, began a serious protocol of supplements and diet. I know everyone is different in this disease. The research began with looking a Patricia's protocol on, Sharon Comden's protocol on yahoo's CBGD group. There are many alternative options, and when doctor's offer "no treatment no cure, I think one must consider his own treatment path. In the Los Angeles, CA, I have been unable to find a nutritionist knowledgeable in tauopathies, so I to do all the research on my own. I hope everyone with PSP has an advocate willing to fight for them in the daily battle in this long war. I also realize that as his only caregiver, and that in-home care is prohibitively expensive in the USA, I am hoping to keep him as able and active as possible as long as possible. Some cost now is better than a horrendous cost later.

I wish you the very best on your journey



where in france are you i have psp and live near limoges


I live in Brittany near Mont St Michelle

1 like

oh dear too far away to be able to get together i guess


dear stalbans...As shssha just said its a long way..i'd love to come and meet you to chat about the little I know about PSP from experience (then naturally each person will have their own symptoms)

so for the moment we'll use this forum to exchange ideas and advice.

I've visited St Michelle ---in the rain! But found it beautiful .

With you in


I believe the sight issues are the result of impairment of the supranacular. It caused me to see double.. I got glasses with prisms and this helped.


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