i may have alzheimer’s disease

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Susan summer 2014

funny, i don’t feel demented most of the time…

I may have Alzheimer’s disease. Or not.

On January 29, 2015, I had my second appointment with a geriatrician; the first was the year before that. In 2014, I scored 29/30 on the Standardized Mini-Mental State Examination (SMMSE or MME for short); I knew the day of the week, but I missed the date. Oops.

A year later I delivered a perfect 30/30. I got the date right because the appointment was the day after my birthday. I turned 59 on January 28, 2015. A nurse administered the test, and then I saw Dr. G., the geriatrician.

I told him that while I had scored perfectly on the test, I had noticed changes in my own behaviour and memory over the last several months.

“The test is only superficial,” Dr. G. said. “What kinds of things have you noticed?”

“Well,” I began, “the other day at breakfast I noticed my toast was sitting on the table, not on the plate where it should have been. And I had no idea how it got there.” He made a note of it.

“I find things in places I wouldn’t normally put them. Nothing like the phone in the fridge or anything, but little things like a sweater in the wrong drawer, or an aluminum pot with the glass casseroles instead of with the pots where it should be.” He made a note of that too.

“Sometimes I can’t remember how to spell words I know how to spell,” I went on. “And sometimes I’ll be working on something and all of a sudden my mind just goes blank. Completely blank. It’s like a vacant parking lot – no cars there, nothing driving in or out. Just a void in my head, like I’m in some kind of suspended animation.” He took more notes.

“Are you stressed?” He looked up from the scribbles in the dossier. Well yeah, who isn’t? “Not any more than usual,” I replied. Which is true. On a stress scale of one to 10, I’m probably a seven. By comparison, a year ago at this time I hovered around 19 on a scale of one to 10, and during 2011/12 it may have been higher as I cared for a loved one with dementia full-time in the person’s own home.

So overall I’m still stressed, but much less than I have been. SNAFU, really 🙂 I told him about the root canal I had in December, the headache and toothache I’ve had for the last month and that I have no family doctor having been deactivated by the one I had because I hadn’t visited often enough. That seems SO wrong to me, but that’s another story.

I didn’t mention I spend half the day looking for things. Everyone does that. Or at least I think everyone does. I also didn’t tell him I occasionally wonder if I’m driving on the right side of the road or not — that’s been happening since I spent a year in New Zealand in 1979.

Dr. G ordered further tests. An EEG, and some kind of additional memory evaluation to start. They say changes in the brain associated with Alzheimer’s disease may begin years before symptoms appear. I suspect many people choose to deny, mask or hide the symptoms until they become too obvious for those around them to ignore. Perhaps they’re afraid to talk about what’s happening to them.

I may be experiencing the early early early stages of the disease. Or not. Perhaps it’s “normal” aging, or something else entirely. I’m not afraid of getting Alzheimer’s, and I’m not afraid of talking about it. I hope I don’t get it of course! But what I hope and what happens may be different things.

Both my aunts had it, my uncle has it not too. My maternal grandfather died in his fifties of cancer, but I believe some of his sisters had it. I recently learned my paternal grandfather might have had it as well.

I believe my risk of getting Alzheimer’s disease if I live into my 70s is relatively high. By documenting and sharing my experience as others such as Kate Swaffer are, I hope to  help people deal more effectively with the disease today and add to the body of knowledge  that will eventually lead to a cure.

If I don’t get it, so much the better. Tracking that eventuality will also be useful, given my family history. However my destiny unfolds, I’ll keep you posted.

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20 Comments

  1. From reading your post and comments, it seems you have a lovely attitude. Since my mother’s official diagnosis, almost 2 years ago I have spent a bunch of tie pondering this same situation. Do I or don’t I? Will I or wont I? I have made some big changes to both my lifestyle and diet that I *hope* will help postpone (or avoid) the disease for me. But in the end, all we have is the life we lead and so I am doing it in ways that open me and my heart to loving and being loved.

    • “But in the end, all we have is the life we lead and so I am doing it in ways that open me and my heart to loving and being loved.”

      Yes Heidi, that’s what I have learned too <3

  2. Nice that you have a geriatrician. We have a shortage of those here.

    I was warned that if you ever want to qualify for long term health insurance, get it before you start talking to a doctor of suspecting memory loss (just a tip in case someone want to qualify).

    Meanwhile, I can relate to many of the same scenarios.

    Thankful we have Kate Swaffer (her blog is here) and Rick Phelps (his blog is here) to champion the way. And maybe us!

    • We have a shortage here too Beth. I was lucky to be able to get the same one to whom I originally took Mom in 2006.

      Thanks for the tip on health insurance…

      Yes, Kate and Rick are both doing a huge amount for awareness and advocacy, and yes we may be next in line…. Who knows what the future holds?

      BTW, I’ve done the first part of the Memory Bridge application process… 🙂

  3. Susan,

    I’m 36 and do many of those things. I’m hopeful that you are experiencing normal aging and with that being said, I’m going to go eat some Ginkgo Biloba.

    Love,
    Sarah

    • Yep. The thing is, we all know ourselves best. I think I am very self aware. My observational skills are excellent. I know what is normal for me and what is not. That said, this is my first time aging so of course it’s uncharted territory. I’m not worried about it, really. It will unfold as it is meant to, and I will share the journey whatever path it takes for as long as I can.

      Thanks for being out and for commenting! We powerful amazing women rock 🙂

  4. Laura Klos Sokol on

    Susan, Thanks for this. I do some of the same things but dismiss my fears and chalk it up to ageing. Your note yanked me out of this denial and convinced me to pay attention to myself. I will spread the word and will start taking vitamin D. Laura

    • Laura, it may well be that all of this is a normal part of aging. Or not! I am doing all that can be done to reduce and/or delay the disease should it in fact lie in my future. For example: I exercise daily, I eat well and healthy, I learn and try new things, I am active socially, I have a good support network. I play scrabble every day. I exercise my brain in other ways.

      My diet includes coconut oil, fish oil, and tumeric.

      I should also further reduce my stress level. Maybe turn my hand at learning a new language or a musical instrument. But hey, I have a lot more balance and risk-factor reducers in my life than many other people.

      All of that said, there is destiny… 🙂

      I will answer your email this weekend.

  5. Carolyn Thériault on

    Nahhhhh, the toast just took a little wander @ the kitchen. You´re fine. We´re all fine. Life is good. <3

  6. Hi Susan! Long time follower of your blogs!

    I heard (and see link below) that if you can smell peanut butter, you do not have it. So on a recent visit from my mother, I bought some pb and came up behind her, asked her to close her eyes, then sniff. I was relieved when she started laughing, asking if I was testing her for Alzheimer’s. Guess she heard that pb story from her doctor, too!

    Check this out – http://www.alzheimers.net/2014-09-19/peanut-butter-test-predicts-alzheimers/

  7. this kind of thing happens to us as we age.

    i just take all my nutritional supplements and hope for the best — just turned 66 last september.

    one of the most important ones is D3. because of my psoriasis i take a higher dosage of that every day.

    D3 is supposed to help people to prevent them from getting alzheimer’s.

    blessings

  8. Katherine Compton on

    Susan, I too just turned 59 and wonder about my memory. I however have been retracing my steps to remember what I was doing or where I was going, for a very long time! We just muddle through and try to bring joy to our Momma’s. I’ll think about me later.
    Thanks for all your lovely words and stories. They truly make my day.
    Kat

    • Yes, for me it started at menopause since which I’ve been wandering around in a daze LOL!

      But we must also think of ourselves. I have learned this the hard way. I’m no good to anyone when I’m broken.

      Take care Kat, I’m glad your out there and it feels great to know I’m making your day from time to time <3

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