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.

I consulted our GP about this new Parkinsonian wrinkle in my mother’s medical story, and the GP said that this was most probably not Parkinson’s, and talked about intentional tremors and non-intentional tremors and  other such things. I remember getting this feeling that he wanted to say more, but was hesitating. He did prescribe a few symptom-based medicines for my mother, including a memory improvement drug and a drug to reduce sleeping, but withdrew these soon after because they were not helping.

Again, we needed to find a specialist. This time, I did not choose a top hospital. I chose a close-by nursing home in Noida, and checked their consultants, selected one whose resume seemed impressive, and who had published papers till quite recently.

This neurologist was a youngish man, sharp-eyed, smart in his walk. I handed him my mother’s file, and he asked my mother to walk, and hmmed and haahed and nodded his head. He peered at the MRI.

He was about to pick up the pen to write a prescription, when I asked him, “Doctor, what exactly is the matter with her?”

He froze. He looked at me, and then at her. He looked at the file. His face changed, went sort of soft. “Oh,” he said, “does that mean you haven’t yet got a formal diagnosis? No one has explained it?”

I shook my head.

The doctor sighed,. Over the next one hour, he ran my mother through a number of tests. He tapped under her knee to check reflexes. He made her walk (she couldn’t) according to various instructions. He told her to close her eyes and touch her thumb to her nose. It went off by several inches. I was stunned to see that. I quietly did the same test for myself right there, sitting in that room, and sure enough my thumb touched my nose without any difficulty.

Mother sure had a problem.

Then the doctor started asking my mother a set of questions I now recognize as MMSE (mini-mental state examination). He asked her what her name was. She gave her first name. He asked for the full name. I was shocked to see it took her time. He then asked her which city it was, and she answered. Country? Yes, India. Date? She looked blank. Month? Year? Blank and blank. She looked nervous and helpless now, and she glanced at me, as if asking for help.

He told her the date and year. He was simple and matter-of-fact, neithr sympathetic nor condescending; his demeanor was almost calming.

She blinked. “July 1? But that is my daughter’s birthday!” She looked at me, apologetic, shocked. “It’s your birthday? I didn’t remember it. Happy birthday. How could I have forgotten!”

The doctor glanced at me, eyebrows raised, and I confirmed that yes indeed, it was my birthday.

Then he asked her what 100 minus 7 is.  My mother, who loved arithmetic, and was responsible for my own love of math, and had even made my son fascinated with math, looked very worried. After a longish while, she said, 107? 100 minus 7, he repeated. Another long interval, and she gave the answer, a wrong answer. She paused, corrected herself. What is 93 minus 7, he asked. She looked so totally helpless. I watched, equally helpless. Over these months, as she had seemed confused and acted in strange ways, I had not suspected such deterioration in her mental ability.

I mean, one doesn’t go around making parents do arithmetic…

Finally, she looked at me and said, “Swapna, help me. How can you sit there and not help me?”

 “It is just for your diagnosis,” I muttered, and averted my gaze.

The doctor checked the MRI again, checked the file again for the latest blood tests, including one that showed that my mother’s thyroid problem was well under control (hypothyroidism causes symptoms similar to what she showed, I knew). He filled out a form requesting a B12 test. “I expect it to come out normal, especially as she is taking supplements and also had those injections,” he told me, “but let me know.”

“So what is the problem?” I asked.

He told me about cerebral and cerebellar atrophy and showed me the MRI (not that it made sense to me). He told me it was likely to be a variant of …and he named something…I asked him to repeat and he repeated it and wrote it down. He wrote out the results of what he’d done, and a provisional diagnosis (all diagnosis are always provisional, BTW). He said that my mother’s brain shrinkage was most prominent in areas that affected walking, though there was shrinkage in other areas, too. Nothing could be done to correct it. The shrinkage was likely to get worse. Some medicines may help a bit in the memory part, but would not work very long, and the condition would deteriorate. Medicines did not correct the problems, and did not work for many people. They had side-effects, but let’s try.

I asked the doctor what caused the problem, and he said it could be hereditary or sporadic. A head injury could have caused it or triggered it.  The word he wrote down was idiopathic. I thought of my mother’s head injury, but that had happened after the imbalance/ vertigo. Yet, the deterioration had been far more rapid after the injury…what caused what? I asked for the probability of my getting it if the cause was hereditary, and he mentioned a very frightening number in a rather apologetic way.

In that trip, and the next (her B12 level was perfectly fine, by the way), I quizzed the doctor more on what to expect. On what we could do. Keep her active as much as possible, he said. I asked him how it would get worse. “Her memory loss will start affecting everything,” he said, and cast a hesitant look at my mother who was sitting there. He turned back to me. “You have to be prepared for it.” He mentioned that I’d need to prepare for her dementia.

On some days, looking back, I wish he had told me more. I wish he had really explained what dementia would do to my mother and all the people around her. Directed me to websites, given me reading material, helped me contact support groups. Told me what skills I’d need to pick up. (To be fair, this happened many years ago, when we didn’t solve problems of life by using Google).

On the other hand, maybe he told me enough for a first dose. Possibly she hadn’t fared badly enough on the MMSE for him to say more. Definitely, he was honest and open and answered all my questions.

One mistake I made was taking my mother with me on every visit. I should have asked for a separate appointment and requested him for more details.

At that time, I was under the impression that my mother, being the patient, had a right to know the truth.

When she had been mentally fit, my mother had always been a great one for facing facts. And she was very well informed about physiology and medical stuff. Once, my father dislocated his elbow. She snapped it back in place immediately, even as he howled his protests, and then she drove him to the hospital. Her action saved him a lot of pain later, because a few days in a sling was all he needed, thanks to her. Another time, my father was driving the car and she was in the passenger seat and he seemed to slump slightly. She leaned over to take control of the wheel, guided the car to the side of the road, stopped it by turning the key. She got out and went over to the driver’s seat, pushed my father to the passenger seat (he was a heavy man), and then drove to one of the best hospitals where they declared that my father had suffered a stroke and complimented her on her prompt action.

Hide facts from a woman this strong? No way.

What I did not realize was that my mother was now in no state to process the diagnosis fully, in terms of understanding it or planning for it. It was frightening for her. That the doctor probably suspected this and would not go beyond a point in describing the full impact of the disease.

How I wish that the doctor had slipped me a note saying, come to discuss this later, without your mother. Or slipped me the numbers of some support groups or site names. But back then there were probably no support groups for ataxia or dementia, or the doctor was not aware of them.

Even after receiving the diagnosis, it took me a while to understand how all-pervading the impact of my mother’s condition was, and how many actions of my mother that seemed mean or stubborn or inconsiderate were probably driven by her growing dementia.  I did not think of checking out about support groups; I assumed there would be none. Such things were (I thought then), a Western concept. There are support groups in many cities now. There are people who can share experiences and help.

From our first visit to a neurologist to the time I got some understanding of what was happening took several years. My mother’s balance problems had been prominent even at the time of the first visit, and even by themselves, they would have made her bed-ridden. Her growing dementia made things worse. I am quite sure that the first two doctors would not have bothered to give me a clear diagnosis and understanding of the problem. If I had not persisted and reached the third doctor (or if I had reached a third doctor who was like the first two), I may have taken even more years to know what the problem was.

All I can say to others is, not all doctors are sensitive. Not all are well-informed, and not all bother to tell the family what to expect. We just have to persist. And I’d say, try to meet the doctors without the patient; they may find it easier to talk. After I got the diagnosis, I was able to start preparing myself. I did not do it well enough, and I was not effective for a while, and I lacked a support group, but at least I was pointed in the right direction. I met this third doctor later with my mother for her post-herpetic neuralgia (because of shingles), and by this time her memory loss and confusion were more visible (even sensitive outsiders guessed something was wrong). The doctor’s advise for her (he still called it “early dementia”) was much the same–keep her active, know it will get worse, there is no medicine, it will be tough.

Google said the same.

With this repeated advice from the doctor, and after a lot of reading up, it became clear to me that the scope of medical intervention moved to handling infections and illnesses and symptoms because the basic problems of her ataxia and dementia could not be cured or treated.

I shifted my focus on keeping my mother healthy and trying to cope with her increasing decline in both walking and in mental functions. Care was what would make a difference to her quality of life.

I’ve written often enough about my own caregiving experiences, so tomorrow I’ll share my experiences of interacting with other caregivers to understand what they are undergoing.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

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