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If you're new to this blog and want some context for it, read this post from the day I announced my Alzheimer's disease and this post about the day I announced I had lost it. For more info, visit my website with my autobiography and all blog entries in chronological order for easier reading to catch up. There's also a sermon on the spiritual lessons I've learned through this journey through my damaged mind.

Thursday, April 25, 2013

My IQ does not measure my worth.

Washington DC
Martti, my Finnish father-in-law, suffered from dementia—not from Alzheimer’s but as a result of a series of small strokes, each of which chipped away step-wise at his mental abilities.  He had been a highly respected math professor at a teacher’s college.  He was a reserved man, committed to propriety, yet he also loved the tango and would occasionally roll up the rug to dance in the living room with his daughter, my wife Marja. 

Finnish men and women of his generation were expected to make formal speeches at special occasions, and Martti prided himself on being able to speak well.  As his 80th birthday approached, however, he was increasingly aware of his decline, yet he knew he would be expected to speak at the gathering in his honor.  He was uncharacteristically anxious and asked Marja to listen to his speech to reassure him it was appropriate. 

In that 80th birthday speech, Martti said, “I have had seventy-nine good years; the last year has not been so good anymore.”  He was very aware of his cognitive impairment and much pained by it.  Shortly after that, he told his family he wanted people to remember him as he had been rather than as he was now.  In his last years he saw very few people outside the immediate family.  

Martti did not reach an advanced stage of the disease before he died; he always knew who we were and could basically take care of himself.  At one point in his disease, he said to Marja, “I used to be the head of this family but now I can’t do anything.”  It wasn’t a complaint, just a statement of fact.  While he bore it without self-pity, Martti suffered from his dementia.


Before my diagnosis with Alzheimer’s, I thought I would feel the same way my father-in-law did, wanting people to remember me as I was at the height of my powers and not as I would become as a result of my dementia.  My greatest fear was that I would lose that which I treasured the most: my intelligence and my independence.  To some extent I still feel that way: Perhaps my greatest sadness is that my grandchildren will likely know me mostly as a doddering old man. 

Surprisingly, though, that fear of intellectual loss has diminished greatly; my attachment to what I used to be is decreasing.  It’s becoming obvious that such attachment to who I used to be at a particular time in my life only leads to unhappiness.  This is true even if we don’t have Alzheimer’s disease.  When I was in my thirties and forties, for instance, my self-image included being a good athlete: agile, strong, and able to run or cross-country ski for hours.  As my body aged and I was no longer so agile or strong, I found myself sometimes depressed because I no longer fit my image of myself.  It was a while until I recognized that hanging on to that athletic self-image was not a recipe for happiness or contentment for a man who was, in fact, going to get older.

Similarly, attachment to my IQ is not going to bring much happiness as the Alzheimer’s slowly but methodically clogs up my brain.

Buddhist teachings remind us that there is no constant “self.”  (See my “Letting Go of Self.”)  The Western idea that our self stays the same throughout our life just isn’t very accurate.  In fact, our self changes continuously and dramatically throughout our life.  The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever.  Let it go!

It may be harder for those of us who have prized our intelligence and seen it as the highest value.  What else would there be, after all, if our intelligence faltered?  How would our life have value?  Those thoughts just reveal our arrogance, our prejudice against those with low IQs.  We fear becoming those who we have not valued very highly.

But I am beginning to see that—in addition to the losses—there may be another kind of joy available as my mental powers decline.  I’m reminded of parents and caregivers of the mentally challenged who talk frequently about the joy they find in the relationship with those whose intellect is deeply impaired.  Feelings are more available; relationships are more immediate; the person is valued, not so much for what he can do but for who he is.  Perhaps it’s the quality of our hearts and not the number of our IQ that matters more.

I’m still early in the disease and haven’t yet lost too many of my intellectual abilities.  At this early stage, it would be na├»ve for me to insist that I’ll live up to my words above.  Maybe my equanimity in the face of this illness will collapse and I’ll suffer like Martti did.  I can, however, see the possibility of just letting this particular self go.  So far, I haven’t clung to the capacities that have already slipped away, and I can foresee accepting the next steps as just part of my journey, too.  I won’t have to try to be the brightest bulb in the room, anymore.  Been there, done that!  Now is the time for a new part of my journey.  Perhaps that is my future.

I wonder about Martti.  Could he have suffered less if he hadn’t been so attached to his previous self?  Would he have been so unhappy if he knew that his value and his worth did not depend on his IQ?  I’d like to think so.

29 comments:

  1. Oh, thank you David! It is difficult for me to admit that I have been proud of my intellect. I think because I am very competitive. It is good for me to face this and realize that I am so much more than my abilities. Paul talks about this in I Corinthians, how God values not the wisdom of men but the weakness, even foolishness. If we enter the kingdom as little children, then those who are going the wrong way on the highway of life (as an earlier poster put it) have an advantage.

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    1. jmojo
      It is so much harder to live this humility out than to recognize it intellectually. Of course, we're proud of our intellect; it's what our culture encourages. And it is a wonderful gift! It's just that it's not what ultimately gives us life ... though for a long time, we may think it does.
      Yes, to become as little children.

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  2. I face the struggle of hanging onto an unattainable self-image every day, as I recover from an eating disorder. My grandmother had Alzheimer's and was pretty happy and relatively unbothered by it through much of the disease. She was the kind of person who always lived in the present and took things as they were.

    As always, I still have a lot to learn from her even though she's gone. Thank you for this thought provoking post.

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    1. I have some experience with eating disorders in my family, and I understand something of the pain they cause. For me to say that we "should" let go of our unattainable self-images is not to say that it's at all easy, and it's certainly not to say that we should make ourselves feel worse by feeling guilty and powerless. We each have our struggles and they are enough for one day without guilt about our powerlessness before them.
      Paradoxically, your grandmother may have had it easier. I'm beginning to think that Alzheimer's makes it easier to let go of who we were. It doesn't seem that many people with Alzheimer's spend much time worrying about that. (My father-in-law had a different form of dementia.)

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  3. I believe that no matter our state as imperfect beings we may long to be who we once were; I know I do. Unfortunately, you're right that we can be much happier by recognizing who we are now and use our past as a way to reconcile and appreciate our present and future. I need to remind myself daily that I'm not who I once was. Maybe that is a type of good news in and of itself.

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    1. The other thing we might remember is that the human tendency is usually to forget the pain of the past. The good old days may not have been as good as we remember them. Besides we can't live there anyway.

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  4. Donna Floyd4/25/2013

    Thank you for your courage and openness today on TV, it made me want to reachout and tell of the wonderful things I learned as my Mother progressed through 12 years of battleing Alzheimers before her death last June. First and most important we learned that Alzheimer's is not painful like cancer. Mother was an athlete all her life and I believe it helped her to enjoy life right up to the end because she remained mobile. She focused not on what she was losing, but on what she still enjoyed, art, crafts, music, and friends. She loved meeting people, so no matter whether she had met them before, meeting them again was a new joy each time. When she had a stroke two years before she died, she had to come live with me. After three months, she needed someone available 24/7 to help her find her way and so she moved to an assisted living facility near me in the Memory Care Wing (Safe Harbor at Cadbury at Lewes)She quickly fit in there and I went in everyday to be with her and help her 3 hours a day. Every day when I went in she would say "What a wonderful Surprise!" to see me. So nothing was mundane anymore, every day was special.She never forgot who I was, which was a great blessing to me. SHe stayed her true self, kind and joyful. The trust she had in me was unshakable, and her friendship was my strength. We had conversations long before this on what she wanted when this time came that I would make decisions for her, and the most important was about medical care.

    Her faith in God was strong, and she did not fear dying, so when the decision was to be made, I discontinued life extending drugs in favor of medications that gave her peace and focus, even though they can shorten life in the elderly according to the PDR. She took these medications for a year and a half before her passing and was able to have joy right up to the last day when we were visited by family and took them out to lunch. If there was one thing I could encourage caregivers to do, it is to have those conversations long before they are decisions. I made the choices my mother wanted, I was there for her every day, and I miss her terribly, but I have no regrets. I prayed for two years before she passed that the Lord would, on the day He chose, let her lay her head down on her pillow and wake up in heaven, and at 3am June 20, she did just that, after having a great day, the day before. It just doesn't get any better than that! So embrace the challenges, look for ways to enjoy the changes, and thank God for His provision daily.

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    1. "It just doesn't get any better than that!" Indeed! It's a beautiful story, beautifully told. I am hearing from so many people, so many people similar stories. This disease, as terrible as it might be, has miracles we never dream of.
      Thank you for writing.
      David

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  5. Anonymous4/25/2013

    nana45
    I saw you on the morning show this morning and it stirred my curiousity because my husband has this awful diease. I am looking forward to your journey as I know my husbands from my side but would love to know how it is on the other side so I might get some insight as to how to maybe communicate with him and possibably get in and understand more of what he is going through. I only know that it is terriable from this side and very heartbreaking. I really believe the Lord sent my your way so that maybe I will have some kind of answers and releife.God bless you for wanting to share your journey

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    1. Nana:
      What I've been learning through these last six months of writing this blog is that this disease is far harder on the caregiver than it is on the person with Alzheimer's. So one comfort for you might be that your husband is probably not suffering in the same way that you are. You might get a little help from reading my two posts on Apr 5 and Apr 7. It is heartbreaking on your side. It can't be anything but heartbreaking. But his experience may be very different. He may be living very much in the present without caring about the past, perhaps not even remembering what he's missing. I don't know what his condition is, but if it is possible for you to live in the present moment with him, you might discover a miracle.
      I wish you God's grace.

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  6. Anonymous4/25/2013

    My husband was diagnosed with Alzheimer's disease and hardening of the arteries at age 69, just one year ago. I set out getting him hearing aids, cataracts removed, and surgery the urologist said he needed. His stomach quit working in between these and a hospital stay ensued. No one could explain why or what caused this. So, several days later, we returned home with a low residue diet requirement and medicine only available from Canada.

    A month ago I went to another part of the house and returned to see his chair empty. I looked out the window and saw him bringing our trash bin down our steep drive with the bin at his back. Suddenly, I saw him start to trot, then stumble, then land with his head against a small concrete wall, his body in a heap. He didn't move, but when I reached his side I could see his eye looking up at me as though he had no idea what happened. A trip to the trauma center showed no broken bones so they bandaged his wounds from skidding on the concrete driveway, told me his CAT Scan showed he could have bladder cancer and to be sure to follow up with our family doctor and urologist. They then put him into a wheelchair and rolled him out so I could take him home.

    He no longer speaks or gives me the yes or no nod I find I've relied upon for quite some time. I now reflect back to see if I can figure out when this all began and am unable to figure that part out. I know I began driving us everywhere because I thought I'd developed PTSD and couldn't ride with him driving. That began in 2007. I know something nagged at me off and on over the past 4 to 5 years, but I wasn't listening to the nagging voice in my head. It wasn't until he drove the car in 2011 and put it in cruise control driving down a mountain road and ended up in a culvert that I knew what the voice was telling me for certain. I had not listened to it telling me his obsession over insignificant details was ALZ. I had not listened when he failed a memory test to qualify for an in-home care policy. Those tiny things that speak loudly to you when you're trying not to listen.

    I'm fortunate. He's sweet, kind, and bothers no one. He sits in his recliner and loves it when I find a music DVD for him to watch -- he loves the music. He does have a few annoying new habits that drive me to distraction and sleepless nights. He's developed hand tremors that he uses to tap his chest at night and that's not too bad, except he switches from that to tapping me starting around 4 a.m. each morning and continues about every 5 minutes. Once I get up, he drifts into deep sleep for about 4 more hours. But now I watch him on my iPad via my newly purchased dlink camera to ensure he doesn't try to get out of bed and end up face down on the floor unable to get up as he has twice since his driveway fall.

    Funny just how much you miss when you live and work together. How much you compensate for one another and not realize it. How often you explain away things, not even realizing it's a signal something is going off course. We had even discussed the potential for him to get ALZ based on his family history. So, my partner of 51 years sits nearby looking content and comfortable and will go quietly to bed when I tell him it's bedtime.

    He spent 22 years in the US Army and followed that with a 10 year career with the VA, then we traveled in our RV for another 8 or so. We worked out at our local gym routinely, ate fresh organic foods, and stayed on a high fiber diet until we had to change. I think his onset is genetic and worry for our offspring. I pray that a cure can be found very very soon for their sake.

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    1. Thank you very much for sharing with us what is a powerful, pain-filled, and grace-filled story.
      One thing I might mention is that your failing to see the signs of his increasing dementia for what they were is very common among spouses. As a physician I was sometimes amazed when one spouse brought in the other, saying that "something" was wrong. One look at the person made it obvious that this person was suffering from dementia, but the partner just hadn't noticed it. I don't know anything official about it, but I suspect it involves at least a) how gradual the onset is, b) our wish to deny what is happening, c) the fear that we feel.
      Thank you for sharing this.
      David

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  7. Donna, reading about your Mom being delighted with seeing you every day, reminds me of that joke, "We'll always be old friends. Until we go to the nursing home, then we'll be new friends." lol .

    David, you needn't worry about your grandchildren remembering you as a doddering old man. My youngest grandson is now 17. Until two years ago, his Grandfather had Parkinson's quite badly. He was in a nursing home for about 8 years. He got to where he couldn't talk, but he was surely "in" there. He actually DID dodder when he walked. Actually maybe his Parkinsons really is the worst that could happen to us. because he was completely aware until that last breath that he knew he couldn't take in. Tyler has wonderful memories of his grandpa Bill. We occasionally sit and laugh about some of the funny stories of things that had happened in the last 10 years. how Bill would sneak out into the yard while his wife was taking a shower. And he would fall down a lot. So he would push the button on his med alert bracelet. So then they would call the house so Dorothy would know to go out to get him. So he would call that his turtle pose. Tyler remembers him very well, and always will. And has such love for that guy. Children are really resilient. And they take us for what we are, not what we wish we would be. At the special care unit, we have a lot of children come in to visit their grandparents. And its very touching to see a four year old, holding Nana's hand, helping her to walk down the sidewalk without falling off the side. And Grandma doesn't know who she is, but she sure loves that little stranger that come to visit.

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    1. Lee An,
      You must absolutely collect your stories and make them available somehow. You have helped me, and I suspect others who read these comments, realize that we have concentrated far too much on our fears and far to little on the joy available to us.
      I'm grateful you're part of this conversation.
      David

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  8. David, I took care of my Mom for the last ten years of her life, during which time she had Alzheimer's. She lived with me the last five years of her life. You hit the nail on the head when you said you Love the person and not the IQ of the person. I loved my Mom dearly and wished that others in my family could enjoy her last few years like I did during her worst part of the disease.. there were many times when we might just sit and watch tv, holding hands. Or I would hug her and seemed like I couldn't hug enough and of course she loved it. All times were not good, but I tried my best to make her last years as good as they could be. I know you will have the same in your family to give you that love and support. I love that you have this Blog.. I thought later that I should have give my Mom a ledger to write in the early days of the disease and in the later days when writing failed her I could have recorded her and ask her questions and talk to her about her disease.. So hopefully you at the time needed will switch to video or recorded writings .. I am so glad I come across this Blog.. My Mom passed away in October 2012 at the age of 81, but I still like to read about Alzheimer's and hear about others dealing with this disease and how they are doing with it. Thank you

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    1. Thanks for writing, PJ. I, too, hope to write as long as I can and then find other ways to communicate when I can no longer write: Having a friend interview me, videos, having her write about me, having others (like Marja or other friends) write about what they're experiencing, and so on. I think it might be valuable to all of us as we struggle how to work with this disease.
      Your perhaps don't want to write about it, but I really haven't heard much from people like yourself about the "times that were not good." I have many stories like yours of the wonderful times ... and I'm so grateful for them, but it would be wonderful to balance those stories with the other experiences. In my own writing I've always tried to be honest about the dark side as well, which I think makes it easier for people to trust me when I talk about the lighter side. So, I'd be interested in the dark side, too. If you'd prefer not to post it publicly, you could go to my website www.davidhilfiker.com and click on the "Contact me" at the bottom of the menu. then write me a message and I will get back to your through your correct email address.

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  9. Pamela Hall4/26/2013

    Dear David,

    I have cared for people with Alzheimers for over 25 years now. They live with me in my home much as my own mother or father would. They become my friends and I enjoy the time we spend together. It doesn't matter whether they remember it or not, we simply live in the moment and enjoy the moment. Of course, I come into their lives when they already have symptoms of forgetfulness, so I only know them as they currently are. I don't have the same emotions a spouse or child might have. It's much easier for me to have a relaxed relationship with them. I'm not afraid of getting Alzheimers myself, because of my friends. They have been content, had fun, discovered new things (many times the same things over and over) We stay valuable human beings our whole life-no matter what, this I know. Thanks for your blog.

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    1. Thank you, Pamela. I wish you could communicate what you have seen to more and more families. It's clear to me that the caregivers have the hardest time with this disease. I suspect that their suffering could be much alleviated if they could find the heart to accept the person with Alzheimer's as fully present to them ... even without much memory. As you write, it's harder for them than for you (a stranger) since they feel they have "lost" the one they loved, but it must be possible to work through that and accept this "new" person into their lives.

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    2. Anonymous8/08/2013

      I just recently spent time with my dad diagnosed 3yrs ago. It was very painful in the beginning but through much introspect and out tro spect that happened,... in much surprise I am able to accept him. and he me.. I had the best time with him my mother his caregiver was given a fresh perspective observing this beautiful time with my father that God himself gave to me... I'm so thankful

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  10. Hi, David, I want to thank you for sharing your journey with us. I stumbled on your blog while researching information about dementia, and Alzheimers.

    My father, Julius, developed dementia several years ago, and has since sunk deeply into its depths. You're right on how it seems to come and go. Some days he recognizes and calls me by my name, and other days he doesn't. If I had a nickel for every time he said, "You know my memory".

    I am 58 and have been noticing for a couple years, now, how my memory is slipping so I worry if I am following in my Dad's footsteps. In my research I've come across some interesting information about coconut oil helping to slow down, and even reverse the effects of dementia.

    I was wondering if you could expound on that and if you recommend any other type of nutritional, or herbal, help.

    Keep up the wonderful blog, I will be following you avidly. Good luck in your journey!

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    1. Hi, Gary.
      You should know that there are kinds of memory loss (particularly for names and faces) that may have nothing to do with Alzheimer's. If you're concerned, please visit a neurologist and have the appropriate testing.
      Regarding the coconut oil, you might want to read my post "Why Not Try This" on March 8. I don't know much about the coconut oil treatment, but then I don't know much about the ten-fifteen other "alternative" treatments that have been suggested to me since I started writing this blog.
      The underlying problem is that when you have a fatal, incurable disease, everyone will be desperate to find something that works. And any potential treatment that has any slight scientific plausibility (such as coconut oil and it's oxidized properties) or that seems to have work in one or two cases or that seems to come from a person with a PhD or MD will be grabbed onto by desperate people.
      It’s not just that I don’t try any of them (including coconut oil), but I don’t really even look into them. The reason is that I do believe in medical science, and if there were an effective treatment out there for Alzheimer’s, it wouldn’t be hiding in rumors on the Internet. One primary problem is that we don't know if anything actually works until there is a rigorous double-blinded scientific statistical trial, which are difficult and relatively expensive to do. But that's the only way to exclude coincidence, incorrect diagnosis in the first place, placebo effect, cherry-picking data and so on that plague any attempt to know whether something works. Am I going to try the coconut oil? No.
      A friend of our family just died of cancer. He spent the last several months of his life chasing down cures when there were no cures. He did not spend the time with his family who needed him. He did not spend the time he needed to prepare himself for death. It was very sad.
      On the other hand, Alzheimer’s is an incurable, fatal disease. Who am I to discourage anyone for following up any lead that they find hopeful?
      I hope to explore this very important topic in some more detail in a post in the next several weeks.

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  11. I appreciated this post very much, especially how you connected Alzheimer's with mental/intellectual disability. I am a parent of 2 children with special needs: my son is 10 years old yet developmentally and cognitively more like a 4-year-old. I think it's really important to appreciate who he IS and what he can do and enjoy, not to focus on what he can't do or what might have been. Speaking only for my own response to him, I know I'm a better mother and a happier person if I enjoy the reality of him as a person and not compare him with others or wish he were different. As you said, "Perhaps it’s the quality of our hearts and not the number of our IQ that matters more." Thank you!!

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    1. Thank you, Jeannie. You might be interested in a blog written by a friend of mine. It's not about intellectual disability per se but about disability in general and how we tend to define disability as inferior. Her name is Ellen Painter Dollar and her blog is: http://www.patheos.com/blogs/ellenpainterdollar/

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    2. Thanks, David: yes, I'm very familiar with Ellen and her blog -- in fact, it's there that I found out about yours!

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  12. Let me preface this post by saying thank you for sharing and inspiring. My dad was diagnosed with small cell lung carcinoma in August of last year, and shortly thereafter with 'early mid' stage Alzheimer's. You are such a dignified example of acceptance in the face of adversity; much like my dad, but you have put words to it. Thank you. I have nominated you for the Versatile Blogger Award, even though I realize this probably means little in the big scheme of things for you. But it was the best way I have to recognize you and to link you via my page to people who may really need to hear what you have to say. Thank you for sharing.
    www.gypsyintheme.com
    http://versatilebloggeraward.wordpress.com/vba-rules/

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  13. Suzanne4/27/2013

    Your observations really hit home. It's such a gift to be able to rejoice in one's self at the moment. Like you, I fear losing my intellectual abilities to disability or age. (I find myself losing words and names already in my early 50s.) Yet a part of me hopes that I will still be able to find value in my very existence, and not become so depressed by what I've lost that I fail to acknowledge the gifts that I still have. Thank you for reminding me of my inherent worth.

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    1. Suzanne:
      Obviously, I don't know from what you write whether you are going to lose your intellectual abilities, but I would encourage you not to be afraid of it. If you'll look around the comments to my posts, you'll see dozens of comments about how happy most people with Alzheimer's seem to be if they are in environments that love them and accept them. Before we are disabled, we value our intellect so much; we feel that it defines us. But this disease can teach us that our intellect doesn't define us as much as we believe it does. I've been trying to be open to the reality that "I" am something deeper and richer than my mental ability.

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  14. i am a family doctor who was diagnosed with early mild cognitive impairment amnestic type thought to be due to alzheimers disease. because of the diagnosis i discontinued practicing medicine. i recently was given an article about you and after reading it felt like our cases were similar.
    i do a daily blog at www.organicgreendocotor.com and write about my story with alzheimers but i also write about other things such as organic gardening, green living, rainwater collection, solar power, and other things i find interesting.
    i am a study subject in the alzheimers disease neuroimaging initiative and have just finished up my two year followup tests-neuropsych tests, blood biomarkers, spinal fluid for beta amyloid and tau, mri scan, amyvid pet scan for beta amyloid
    so far my tests say its alzheimers disease. i have a positive apoe4/apoe4 genotype, abnormal levels of beta amyloid and tau protein in the spinal fluid, a strong family history of alzheimers, and soon will get the results of my amyvid pet scan which i think will be positive.
    i was diagnosed when i tried to enter the study as a normal volunteer.
    i like you have decided to be open about my diagnosis so that more people will know about this disease and to try to talk about it as much as i can.
    i am glad to have found your blog and your story

    wish you well with your journey
    the organicgreen doctor

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    1. Thank you for writing, William. We are, indeed, on similar journeys ... right down to being family practitioners (although I left practice long before my cognitive impairment). I also am in a study that will ultimately give me those tests you mentioned, which I also expect to be positive.
      Right now, I couldn't imagine not being open about my diagnosis; I think I would feel so isolated. I'm glad to hear that you're taking a similar path.
      I just checked on your blog. It's pretty amazing ... bells and whistles that seem important. Soon as I can get through the recent publicity I'll see how I can make this more complete, too.
      Thanks again. I expect we'll be in touch.

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