What is Progressive Supranuclear Palsy? share the testomony from a caregiver in India, 2011.

"World Rare Disease Day and My Lessons From it All", Posted by Mom-Lady on February 27, 2012 in Talking Points.
  


Acknowledgment to Ms Anusuya Datta (New Delhi) relating her caregiving experience with her father who suffered from PSP .

Excerpts:
....."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?

My father recently died of a rare disease called Progressive Supranuclear Palsy or PSP, a neurodegenerative brain disease that has no known cause, treatment or cure.

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."

..."The disease systematically robs the affected persons of their independence and basic character. Often, the first to go is the eye movement, followed by gait and balance problems. 

This continues for years, with the persons losing their ability to perform executive functions one by one. Finally, there comes a time when they can no longer stand or walk and ultimately end up bedridden. 

Next to go is their ability to speak and use their hands. Soon they have a tough time focusing or looking up and down, and finally even blinking, or opening or closing eyes become a problem. In the last stages, the patients can no longer move or even eat and drink.

Yet, PSP in itself is not directly life-threatening. Patients often die of associated complications — like pneumonia and malnutrition owing to swallowing difficulties. Multiple organ failure is what is written on Dad’s death certificate. What caused it, the doctors don’t know. As one of them explained, it was possibly the brain’s way of switching off."

.....

"Imagine a visibly healthy person with no peripheral vision (the problem can never be diagnosed by eye specialists) or with severe balance problems (this again, cannot be diagnosed by normal orthopaedics), being told again and again by doctors that everything is fine with him and he is just not making an effort. Soon, the family joins in. Imagine a person’s horrors when he can’t remember basic things like how to take a bath or button up a shirt, or he suddenly discovers he can’t read and write, or how and what to talk? 


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/incapacities", "I wasn't in the dark/ignorance anymore".
"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.