I have contracted cureppsp.org . what I gather no known treatment for PSP. I cannot explain in words how hard it is to see someone dying . I only wonder what can I do ? Doctor came to see my mother yesterday and told that they only recommend medicine which are proven...they are not scientists ..
According to him most neuro diseases are still uncurable today , we need more research.
We are grown up with the belief that when you are ill, go to a doctor , he will give u medicine , u will be well . Sadly this is not true for most of the neuro issues and we still have to know how the brain works , more research is required .
I am not a doctor , I am a IT professional and I was thinking how I contribute for bring out a cure to neuro issue . Will I remain a silent spectator ?
I feel not .. I will try best of my abilities and bring out a cure .
I was thinking of crowdfunding for focussed research for Parkinsons , PSP, neuro problems .
Comments requested.
Siddharth Roychowdhury
Calcutta / India
+91 9883225454
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sidharth_roy
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It is hard to watch a loved one suffer and have to stand by helplessly because there is no cure as yet. But I urge you with all my heart and soul be there with love and support for your mother. The main thing you can do at the moment is spend time with your mum comfort her when she needs it laugh with her when she wants to laugh.
If you feel that you need to look for a cure do it as after thought dont let your frustration about the no cure spoil what time you have left with your mum. If you are not careful the anger and frustration will eat you up and cloud your relationship with her and that will not do either of you any good. Janexx
What ever it is you do count me in anything I can do to help I am thinking next summer I will do a state to state walk with my aunt Bev to bring awarness is seems it has to be something drastic to get someone to notice.
I think we all help in different ways..I am too tired to focus on the cure side and probably too bitter from experience with just such things. We need a famous doctor on our side and we need to send data about our experiences.
I have never had a neurologist anywhere, USA or Latin America, listen to anything I said about my husband.. what helps and what is a waste of good money. My husband has PSP, which is supposed to not be hereditary, but his father died of it at 73, my husband is now 72. I believe the disease started much earlier than the Dx of it here. But the doctors would not listen, I have told them that cannabis helps incredibly, actually bringing back his cognitive abilities with 3 puffs (THC) and the effects last about 3-4 hours in the middle stages of the illness but less than 2 hrs in later stages. But that really made the doctors crazy although I am a research professor of psychology, and know what I am talking about and had gathered reports from observers who were not believers until they saw my husband turn back into a normally thinking person,--testable differences-- with only a tiny bit of THC the active ingredient in marijuana. So I am really through with that attempt. I have also worked in development (fund raising) and have seen how money is wasted and poorly used and who gets funded and who does not and the politics of research and the greed of big pharmaceutical companies to not support research that doesn't have a huge financial payoff. (Billions of dollars not just millions).
I think if the president of some Fortune 500 company would get PSP there might me some money for focused research. At this point I am more concerned about money to help all the caregivers out there to survive while waiting for a cure. Some people are in truly terrible situations caring for children, and aging parents or spouses, while working. Others have no money for food if they buy any medicine or pay for help.
Neurological disorders are different than diseases you can catch or eliminate with DDT. Also old people, and the biggest population of patients are over 60, who have never in the USA been high on the list of priorities. Easier to raise money for children, they are cuter. So I am focusing on the people who are taking care of the people with the disorder. Here in Costa Rica things are very bad. There was a lovely daycare center for people with dementing illnesses but the city closed them down because they didn't have the right forms and licensees.
I believe that the most or rather the best is to honestly tell friends what is wrong--I knew one woman who had cards printed up explaining what was wrong with her husband and who to email (the association) for more information if they were interested. But right now it is love that I am giving when I am at my best and learning about what a marriage really is when the going gets very rough and what loving someone truly means.
Please keep writing to this online group with your impressions and keep notes of what you observe.
thanks for the email madam. It is nice to get informative emails. Let us expand the group , let us also approach as u have rightly said CEO, Celebrities etc. Let us have a weekly online meeting where we can discuss how to go about . I am sincere in my efforts to try to bring a cure , though I am not a doctor or a CEO ..
I will joint with you in anyway I can. Why don't you post a message on this group and see if others are interested. Possibily we can look at world wide association for neurological diseases, PSP research projects or trials, look at the End PSP assciation site and gather information on what is out there. I will see what I can find and be in touch with you.
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