by Dr. K. Javeed Nayeem, MD

Yesterday morning I was one of the handful of people from the city who gathered at the F. K. Irani Hall of the Rotary Club for the inauguration of the World Alzheimer’s Month by the Mysore Chapter of the Alzheimer’s and Related Disorders Society of India (ARDSI). Most of the others present there were Pharm D students from the Sarada Vilas College along with members of a few families which had someone afflicted by the disorder. Noted jurist and scholar, Prof. C. K. N. Raja, well-known not only for his eloquence and the depth of his knowledge but also for his astute sense of humour, was the chief guest and as expected, he did full justice to what was expected of him as the principal speaker.

Unknown to most of us, even as we step out of our thirties the neurons or nerve cells that make up the most important component of our brain begin to die steadily. We lose about a million such cells every day for the rest of our lives and while a million is indeed a very big number, there is still no cause for alarm as this loss is only a part of the normal aging process. But in Alzheimer’s disease, which is a slowly progressive degenerative process and which is the commonest form of dementia, the neurons begin to die at a more rapid rate than normal, resulting in loss of memory and other cognitive functions. There is no cure for the disease, which worsens as it progresses, and eventually leads to death.

It is estimated that on an average it affects 1 in 85 people globally and so with this alarmingly high rate of prevalence we do not have to look far and wide to find a household which has someone suffering from it. Therefore, this is a malady that now only needs a seeing eye and an understanding mind. It was first described by German Psychiatrist and Neuro-Pathologist Alois Alzheimer in 1906 and was named after him. Forgetting is perhaps one of the greatest gifts of nature to man because it helps us to lose track of our losses and sorrows. Most of the things that we remember are from among what the mind keeps recalling and refreshing in the process of using its vast information bank. The rest of the things that we are exposed to during our passage through this life are like the trees and telegraph poles that fly past outside the window while we are on a train journey. They are never a part of the landscape when we arrive at our final destination.

But there are exceptions to this rule and we can never know what sometimes appeals to our minds to be considered worthy of being remembered permanently. Pierce Harris, American clergyman and writer has rightly said that “Memory is like a child walking along the sea shore. You never can tell what small pebble it will pick up and store away among its treasured things.”

But imagine a situation where a person who should have remembered all the things that are most essential to lead a normal life, like his or her own name and address and the names and faces of his or her relatives is simply unable to do so. What if one is not able to remember everyday things like what one is supposed to do at the dining table or the wash basin or the bathroom? What would be your fate if you are just not able to recognise your children or your spouse with whom you have been living for years under the same roof? What if you are simply unable to fathom who you are and what you are supposed to do with the world around you?

Very early this morning I was faced with a slightly similar situation when I sat down to organise some resource material about the nuances of human memory for this article. From my rather unmanageable and as yet unorganised repository of books, when I pulled out and dusted the November 2007 issue of the National Geographic which had an excellent article on memory; ‘Why we remember and why we forget’, I was aghast to find that someone had simply torn away all the twenty-four pages that I was looking for, perhaps while it had its short stint in my clinic waiting room! Only then did I realise why it seemed much slimmer than it should have been!

Most often, patients of Alzheimer’s who cannot remember who they are or what they are supposed to do in the world around them suffer in silence. Not so much from the insensitivity of their loved ones as from their overwhelming ignorance. As things stand today, most of us do not have the basic knowledge about the disease and what we can do about it. Even among the most educated class of people the gaps or lacunae in the knowledge about Alzheimer’s and how it can be managed are not unlike the lacunae in the minds of the sufferers themselves. This is because there has so far not been sufficient community effort to educate the people about the magnitude of the problem and how it can be managed.

It is here that the role of bodies like the ARDSI becomes important. The Mysore Chapter of this Society, which is managed by a team of eminently qualified and unusually dedicated individuals, plans to hold many public awareness programmes during the course of this month. And, it is by strengthening them and supporting their activities that we can ensure that we remember all those who cannot remember who they are. And, who knows? One day we may be the ones who stand with blank stares where they now stand. To illustrate the sensitivity with which the problem needs to be managed, I would like to narrate a small story which I read as a child and which has thankfully remained imprinted on my mind over the years.

An elderly man’s wife had become completely bedridden due to Alzheimer’s and was admitted to a hospice for terminal care. The husband used to visit her unfailingly every day, with a bunch of flowers or a get-well card. He would place these on the table near her bed and holding her hand he would talk to her softly for hours, telling her how much he loved her and trying to remind her about the happy days they had spent together. The wife who was certainly beyond any help would simply stare at him or the ceiling with no sign of recognising him or understanding what he said.

A friend who sometimes accompanied him once pointed out to him that the whole exercise seemed pointless. He said “I don’t think she knows who you are now. Why do you waste your time trying to talk to her for so long every time you visit her?”

The husband replied, “Yes, you are right. She perhaps does not know who I am, but I still know who she is.”

[To reach the ARDSI please contact Mr. H. Joshi, Vice- Chairman, Mob: 96633-73701 or Mr. Arun Kumar, Secretary on Mob: 98451-16188].

e-mail: kjnmysore@rediffmail.com

source: http://www.starofmysore.com / Star of Mysore / Home> Feature Articles  / September 05th,  2014