“The Indian Caregiver’s Corner” :
A Family Caregiver sharing her experience in Delhi:
We had suspected dementia or some kind of mental problem but since his memory was more or less intact, The docs never took our worries serioiusly. Meanwhile his movements were getting slower and difficult. the orthos we consulted couldnt come up with any reasons naturally. Its only when he has taken to bed and cant walk without help and shows a very prominent backward gait and almost zero eye movement and a mask-like face -- which i am told are the give away signs of PSP.
To cut the long story short, I am here to get some first hand knowledge about how to deal with such patients. We dont have much support in terms of local support centres or counsellors. Also, I believe world over not much research has been done on PSP."
I dont know in terms of research, but at least that hasnt created awareness or even empathy among the medical fraternity at large to even diagnose the disease instead of dismissing it as just another mental/spousal problem.which is what we faced for the last 2/3 years. When dad was showing distinct signs of dementia, the docs said it was his problem with mom or us, may be we didnt treat him right etc etc.
Finally when he fell sick and lost almost all capabilities of moving or speaking etc, Even then the docs at a very premier institute of mental health and behavoiur (VIMHANS) in delhi dismissed it as not dementia. They said he is a selfish man with selfish needs and there is nothng that can be done about it. They kept him for one and half months and ran tests and drugs on him like whatever they felt like. Finally they couldnt explain what his problem was.
More infos on PSP at : http://www.medicinenet.com/progressive_supranuclear_palsy/article.htm