Acknowledgment to Ms Anusuya Datta (New Delhi) relating her caregiving experience with her father who suffered from PSP .
....."There are estimated to be over 3.3 crore patients in India suffering from rare diseases. There are about 6,000 to 8,000 rare diseases in India and the unfortunate part is most do not have any cure. Now, why is this event important for me?
Let me quote here from Cure PSP, the foremost organisation working towards cure and prevention of the disease: it is extremely rare and known to strike about only six people per 100,000 population. It affects the nerve cells that control walking, balance, mobility, vision, speech, and swallowing."
He is scared, he can’t share this with anyone, may be he thinks he is losing his mind. He needs support, but of course the family thinks he is just being lazy. So, he is more scared, gets defensive, aloof, withdrawn. As it is the world of communication is fast shrinking for them, we in our ignorance help shrink it faster. He didn’t talk much, we didn’t bother why. And neither did the doctors."....
READ FULL ATICLE at: http://www.howzzit.com/2012/02/27/world-rare-disease-day-and-my-lessons-from-it-all/
Alzheimer's Disease in India: Thank you Anusuya Datta for this piece relating your experience of PSP through your father's condition these last years. It supports our "actions" in regard of the importance of raising awareness among the society and the importance of having an early diagnosis.
Indeed, even though there is no cure yet, it gives at least an ANSWER to the patients and the families about what is happening and then some understanding, maybe some "keys" for possible adjustments and/or arrangments.
As though the diagnosis doesn't decrease the sorrow, people affected by a disease express their RELIEF after knowing the information : "I've been relieved, there was a NAME on what was happening to me.", "I understood there was a reason for my deterioration/
"We understood it was not his/her fault", "we felt we were not alone", "we could adjust better", "though his/her ability to comprehend deteriorated, with right infos and support we made it to communicate according to the stages", "with support we could share this beautiful experience each times it happened" etc etc etc.