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.

This is how a typical conversation would go.

Neighbor/ other: “Your mother seems to have problems walking. Is it Parkinson’s?”

“No, it’s not Parkinson’s,” I’d say. “She had cerebral and cerebellar atrophy in her brain and–”

“So is it Alzheimer’s?” the person would ask.

“No, it is not Alzheimer’s, it is–”

Then what’s the problem?” (This would be said, not as a curious or concerned question, but in the air of someone who has caught me out in a lie for saying there is a problem when there is none).

“The part of the brain that controls walking has shrunk and–”

“She is very weak. You should make sure she eats well. You must cook things she likes.”

“She’s always been slim. The problem is because of the atrophy in the brain in the parts that–”

At this, the person waves impatiently and sighs in an exaggerated way. “Didn’t you say just now she doesn’t have Parkinson’s or Alzheimer’s? Give her good food; she is just weak.” And again, that air of someone who has caught me out in a lie for saying there is a problem when there is none.

Funny how most of us assume a problem could not exist if we haven’t heard of it 🙂

Sometimes, I’d go on to explain that the brain controls how we walk. Just as we would not expect a person with an amputated leg to walk without support/ prosthesis, she needs support to balance because the part of the brain that coordinates her walking ability is severely damaged. Doctors have told me the atrophy is irreversible.

Some people would stop at this point, looking puzzled, and sometimes somewhat convinced. Benefit of doubt given to me, I hoped.

Some other persons reemphasized on good food and making her strong and getting her to walk without aupport because they were sure she could do it.

And interestingly, a few would say something like, “I don’t see anything wrong with her. She looks perfectly fine. She’s just thin.”

Ah, here’s to people with MRI eyes. I’d like to see them tell a diabetic that they don’t see any problem with his pancreas 🙂

I mention these interactions to point out one mistake I made for many years: trying to be exact in telling the truth.

I realized how stupid I was being after my mother once had a head injury and I rushed her to the hospital. As she was being wheeled into emergency, I approached the doctor on duty (probably a sleep-zombie on a 36 hour shift). I told him that about her cerebral and cerebellar atrophy and mentioned the precise name of her problem.   Then I mentioned her dementia to explain that she would not be able to communicate well because of it. I told them she was unable to bear the air-conditioning cold, and that she must be kept warm (I had swathed her in woolens) I handed over her medical files and reports, which included, right on top, a one page medical history summary and current medication details. I showed the page to the doctors while giving the file.

They shrugged and grabbed the file, very busy with the emergency. They bustled around my mother and shooed me out of the Triage. When I was finally allowed in, I found my mother on a metal chair in her nightgown, without slippers, her woolens on her lap, shivering and obviously scared. She grabbed my hand. I made her wear her woolens. There was no doctor or nurse anywhere near her. She wanted to go to the bathroom, and had tried telling them that (those days, she was moderately continent) but no one was listening.

Turns out they stitched her head and took her for a scan, which meant removing her clothes. They never bothered to help her wear her clothes after that.  They did not bother to wrap a blanket around her. The scan was normal, the show over, interest over.

This is what her discharge slip said: dementia with OCD.

OCD? Excuse me? I’d said a variant of OPCA, even expanded the phrase. It was written in the summary in her file.

Well, if doctors did not bother to understand, was a layperson really bothered about whether her dementia was Alzheimer’s or not?

Point is, dementia is not a disease–it is the name given to a group of symptoms, and Alzheimer’s Disease is just one of the possible diseases that can cause the symptoms. It is the cause of 50 to 75% of the cases (as per Dementia India Report 2010), which means there are enough patients who have dementia from causes other than Alzheimer’s. In some cases, the cause is never precisely pinned down.

But Alzheimer’s is what gets press coverage. That, and Parkinson’s. Those are the buzz words. That’s what articles in newspapers and magazines talk about.There are whole sites on these, and support organizations and research centres. Many people use dementia and Alzheimer’s synonymously when talking informally. Even if doctors use the terms precisely, a casual reader will not note the distinction between dementia (a group of symptoms) and Alzheimer’s (one of the many diseases that causes dementia).

People may not know what Alzheimer’s is, but they have heard the name. They know it is a genuine disease. It exists. (They know of it, therefore it is real)

After that head-injury incident and insight, when someone asks me what is wrong with my mother, I tell them she has a problem similar to Alzheimer’s. If they say, but not Alzheimer’s? I say, the symptoms are the same. Just like Alzheimer’s, I say. After all, they are not bothered about the exact neurological problem underlying dementia any more than they care about whether the cause of diabetes is in the stomach or liver or pancreas, so long as they know the patient should not be offered sweets and his wounds heal slowly.

Some better informed people question my mother’s walking, so I add that her “variant of Alzheimer’s” also affects balance. Not Parkinson’s? they ask. No, it is a different type of balance problem, I tell them. But this also is because of the brain.

I hate being imprecise, but my purpose now is to communicate in ways people understand, not get good grades for knowing the correct name.

One great plus point is that pictures of brains shrunk because of Alzheimer’s are readily available. I’ve mentioned before how useful pictures of dramatically shrunk brains are for conveying the problem. Sometimes, I show these pictures to people. “Is this what your mother has?” they ask. “Something like this,” I say.

Her problem is like Alzheimer’s, hence a genuine problem, and you can know I’m not lying because I’m using a name you see in the newspapers. I’m showing pictures. That works.

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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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