Do I Really Have Alzheimer’s?

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When, in conversation with another person about my Alzheimer's, I mention one of my particularly frustrating symptoms, they'll often respond with something like, "Yeah, I know what you mean; I've been getting a lot more forgetful, too."

It drives me nuts.

Usually, I just let the comment pass, but it most often feels like a dismissal of my diagnosis, as if to say, "Everybody gets like that sometimes; don't take it so seriously."

It irritates me, so I list a few of my more abnormal symptoms to shut the person up.

But sometimes they'll respond to that by saying something like, "Well, you said you're not 100 percent sure you have Alzheimer's, didn't you? It could be something else, right?"

Yes, it could be something else.

But it's not.

I can't blame my friends; they're just trying to be optimistic or make me feel better or, perhaps, shield themselves from the fear of the disease. Or maybe they're just trying to make sense of the disease, to understand what I'm going through and I'm just being overly sensitive.

As I've written before, a definitive diagnosis of Alzheimer's disease can only be made at autopsy. In clinical practice, however, the diagnosis is made by testing for dementia using a cognitive function test and then ruling out other causes of that dementia. For some of us with early disease, however, we don't even meet the official criteria for dementia, which, in practice, usually means a score of less than twenty-five out of thirty questions on the Montreal Cognitive Assessment (MoCA). Those of us who score between twenty-five and thirty are given the diagnosis of "mild cognitive impairment" (MCI). If the other causes of dementia have been ruled out, however, MCI virtually always progresses to Alzheimer's.

So do I always feel absolutely certain?

Well, mostly I do.

My personal neurologist believes my MCI will progress to dementia, as does the research neurologist I've asked. At an intellectual level, I'm convinced this is Alzheimer's disease.

But am I absolutely, 100 percent certain?

No. And that little bit of uncertainty makes this difficult disease even more difficult.

As a doctor, I understand that in medicine almost nothing is certain. Sometimes we just have to wait and see. But, even so, the three years since my first symptoms feels like a long period to wait.

Most neurologists, I suspect, don't mention Alzheimer's to people with early MCI unless they ask. At my first visit almost two years ago, my neurologist told me about my score of twenty-seven but—perhaps noting that I hadn't asked—didn't specifically mention Alzheimer's. That I—a guy who always wants the details—didn't ask specific questions after missing three questions on the MoCA surprises me.

Perhaps it indicates my own fear of the disease at that time.

I have a lot of confidence in my neurologist, and, when I asked about Alzheimer's at my visit this past September, he was candid saying that he thought my MCI would progress to Alzheimer's.

There's really no way around this dilemma of uncertainty, but it raises uncomfortable issues for those of us with mild cognitive impairment. We ask ourselves questions like:

  • What's really going on?
  • If it's not Alzheimer's, what else is it?
  • If I'm not 100 percent sure, do I inform my friends, anyway (much less go public with a blog and newspaper interviews)?
  • Do I go into all the details of MCI versus Alzheimer's every time someone questions my diagnosis?
  • Do I take the major steps to reorganize my finances?
  • If my job requires a high level of cognitive ability, do I quit now or wait to make a serious mistake or have my boss fire me?
  • Should I apply for disability?
  • Should I get started on my "bucket list"?
  • What kind of advance directives should I make?
  • Obviously, some people would rather not know and deliberately avoid the diagnosis.
  • Others move into active denial, perhaps never facing their reality.
  • But for those of us who want to know what's happening to us, why we're forgetting so much, why we've declined intellectually, the uncertainty can wear us down.
  • I'd be interested whether others with who are in the early stages of Alzheimer's find this limbo nerve-wracking.

An author and former physician, Dr. David Hilfiker was diagnosed in 2012 with a progressive mild cognitive impairment. His doctor thought it was Alzheimer's but additional testing proved this initial diagnosis to be wrong. Now David must learn how to come to terms with the reality of worsening cognitive issues that appear to have no cause.

Watching the Lights Go Out

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8 Comments

Its hard. No one wants to believe you have Alz, they'd rather not face it! But you are trying yoru best to face it head on and for that I admire you. You can have bad memory from drug side effects or maybe vascular reasons or even migraines, but if you know its Alz and are doing your best to do as well as you can for as long as you can, and others are minimizing, I guess it can't help but feel discouraging rather than helpful. And yet I've been guilty of this too, when some of my older friends have talked about not having much time left, I and others often say things like no, you'll outlive us, you are doing too good....I guess it is hard to know what would be most helpful. Acatually, any ideas of what REALLY would be more helpful from your point of view would be great!
Personally I am not a doctor but I would want to know so I could place myself in a home where I could be cared for. I have no family to care for me.
David, I have a friend who has been diagnosed with MCI, at the Abigail Van Buren Alzheimer's Research Clinic at Mayo Clinic, Rochester Minnesota. The neurologist there is quite certain it is a precursor to Lewy Body Dementia. I think one of the factors in that diagnosis is that my friend has REM Sleep Behavior Disorder. Of course, no one will know until dementia symptoms appear and even then it can't be confirmed except by autopsy. He went through a 10-day Brain & Body Wellness Program for Persons with Mild Cognitive Impairment, at Mayo, and says it was highly beneficial.

Three years seems like a long period to wait for a more definitive diagnosis. I hope you have another three years before the disease has progressed to a point where diagnosis is more certain. In fact, wouldn't it be wonderful if you never reach that point, but have only MCI indefinitely? I know that is not likely, but I would think the longer the delay, the better.

My friend mentioned trying to talk to a couple of close buddies about his reactions to having a progressive, terminal disease and their reaction was that "everyone is going to die." That reaction seemed dismissive to him, like he is not being taken seriously. Does that sound familiar?