Finally, some clarity about the diagnosis

After our interaction with the second specialist, my mother was understandably quite upset with neurologists in general, and not willing to venture out again.

Our GP, who was also a neighbor and knew us quite well, had no suggestions about what we could try (other than try another specialist). He said the problem was most probably neurological, but did not give a name to it (I think he suspected the diagnosis, but felt it had to be delivered by a specialist).

My mother, meanwhile, tried a round of homeopathy, gave up. She would tell friends about the walking problem, and even if she didn’t, it was visible enough. A family friend brought along a doctor sister, who examined my mother very carefully, and then said she suspected Parkinson’s. This lady was working as a volunteer doctor in a village and she told us that problems like my mother’s were often undiagnosed. She reiterated that people usually labeled such problems as ageing, but these were not ageing, and we would have to take care of her as the problem would get worse. This was a short visit; perhaps she would have said more if we had met her for a longer time.

When the specialist laughed at her

The first specialist we consulted may have shrugged off follow-up visits, but his manner had been so unsympathetic and the information he gave so scanty that we were not sure we’d done enough for the situation. On the other hand, the whole experience had also left all of us–and especially my mother–reluctant to go to another doctor. My mother felt insulted, and probably was shaky inside because she was experiencing more cognition problems than were obvious to us. Now she did not feel she could talk to a doctor…

It took my mother a while to agree to consult another doctor. Her walking problems were alarming by now, and her memory loss quite obvious within the family. We finally narrowed down to a hospital that specialized in neurology, and where every doctor was a superspecialist. Surely my mother would get suitable attention there.

Our first consultation with a specialist

My mother’s initial problems were mainly related to balance, though her memory loss had also started by the time we reached our first neurologist. Her balance and coordination problems (ataxia) were visible, while problems such as memory loss, disorientation, and inability to do things were in a very initial state.

I was only peripherally involved in her health at that time; I did not see myself as someone responsible for her health and helped out when she asked for help. My parents were independent, and would have resented any “interference” and I was engrossed in my life. Most of us do not get involved in parental health unless pulled into it, which often happens only after symptoms have crossed a threshold of alarm.

My mother complained of minor dizziness problems in 1991/ 1992. As she had a medical history of cervical problems, and the dizziness seemed minor and very occasional, she was not too concerned. In 1992,when I’d gone out of town for a trip, my mother drove to Pallika Bhawan, then visited an emporium on Baba Kharagh Singh Marg, where she swayed when climbing one of those arty spiral staircases. She fell, hurt her head. There was plenty of blood. A good Samatarian rushed her to a hospital where they stitched up in her head. She managed to remember the home phone number, and my father was contacted. The doctors did a CT scan which was normal,and their report mentions no “age-related” anything in it.

Not Alzheimer’s or Parkinson’s? Then why’s there a problem?

When my mother started facing balance problems, I had no clue what was happening, but I’d heard of Parkinson’s and that was my first suspicion. When she started facing memory loss, the only disease I knew related to that was Alzheimer’s. I didn’t know much about either Parkinson’s or Alzheimer’s, but I’d heard these names, and seen articles on them. I’d made a quick mental note saying I may need to know more about these problems some day. I’d even kept some cuttings “carefully” for later; I wonder where they went 🙂

As it happens, my mother’s diagnosis was neither Parkinson’s nor Alzheimer’s. We went through multiple neurologists before I was given a documented diagnosis, and I took pains to memorize the phrases in it so that I could tell anyone who was interested the exact problem.

Of probabilities and acceptances and dementia risk factors

On this day eight years ago, a senior neurophysician told me my mother had dementia.

My mother and I sat in his consulting room. The doctor had conducted a number of tests, checked her MRI, and asked her many questions. When my mother, a highly intelligent woman who did masters studies in three subjects, was unable to answer his question of what equals 100 minus 7, she looked utterly woebegone, and somewhat ashamed.

Finally, the doctor turned to me and said that for her form of dementia, there was no treatment, let alone cure. He suggested that I try to keep her mentally and physically active, and hope the progression was slow.

I asked him, “Is the problem hereditary?”

“With a probability of fifty percent,” he said.

Fifty percent.

It was just too high.