On Amtrak Somewhere in West Virginia
I’m learning about uncertainty.
I no longer have a reasonable medical explanation for my own experience. An extensive battery of medical tests gives no physical evidence of brain dysfunction. Laboratory results for many of the usual and unusual causes of cognitive impairment have been normal several times over. Two different MRIs of my brain have been negative for brain tumor, stroke or hydrocephalus. Two PET scans give no evidence of Alzheimer’s disease or even dementia. And, most disturbing to me, recent neuropsychological testing shows no evidence of any cognitive impairment at all. So intensive medical examination that would be expected to explain my symptoms cannot. There are no more tests to take. I must learn to live with the uncertainty. In the past I’ve not liked uncertainty, but this time it hasn’t been so bad. Whatever my impairment is, I’ve learned a lot over the past year about accepting uncertainty. Despite the uncertainty, I’m actually a lot happier than I was two years ago.
I can only wait and see what develops. Either my symptoms will get better, or they’ll stay about the same, or they’ll get worse. If they get better, I don’t think I’ll really care much about what caused them. If they stay about the same, I’ll probably never find out what’s causing them, but I’m in good enough shape right now that life would be fine. If my symptoms get worse, the physicians will eventually find evidence of my impairment if not a cause. So, I just have to wait.
I can partially explain my acceptance because—regardless why my brain function is slowed—there’s no treatment anyway. So the waiting becomes more of a spiritual discipline, a training period for living in the here-and-now and accepting the world as it is.
I’m learning to trust myself.
I’m a child of the Enlightenment, which accepts as definitive truth only things ultimately provable by physical evidence; according to that philosophy, just because I experience something doesn’t mean it’s real. It could be a mirage, a misunderstanding, a hoax, or all sorts of things that would make my own experience unreliable. As a physician, I had too many patients whose story simply didn’t match the evidence I had. True, for many of them their symptoms were psychosomatic: very real but due to emotional not physical causes. Some of those contradictions were later resolved by re-examining the lab or x-ray tests. But some were just mysterious. Unlike most physicians, I suppose, I felt responsible to believe those mysterious stories, trusting my patients’ experiences even if I couldn’t explain them, yet.
Trusting my own experience in the face of contrary objective evidence, however, is new for me, and it’s taking a little bit of practice to get used to it.
I know I’m experiencing cognitive impairment. I trust that it is real despite the evidence. I’m choosing to trust myself more than the evidence. This isn’t easy for me. Even writing this I feel defensive, vaguely guilty. (Just for you who worry about me, I don’t believe I’m guilty of anything; it just feels that way.) But this past year of living with uncertainty about my future has given me some small confidence to trust that I’m okay in the here-and-now. When I live in the here-and-now, uncertainty about the future ceases to matter.
Thank you for sharing. Seems so strange there is no name or designation for what you are experiencing - at least at this point. Wouldn't wish your symptoms on anyone else but if there are others who come forward maybe a cure or cause could be found.ReplyDelete
Dr. Hilfiker, Your posts are so informative. You talk about "uncertainty. I wonder what your wife's thought are on the same subject as a spouse caregiver.ReplyDelete
I assume (but know what "assume" often leads to) that in the testing you have had that you have looked at potential dietary issues that might be having an impact. I ask because I have been doing a fair amount of reading about gluten sensitivity and memory issues is one of the (many) potential side effects that gluten has on many people.ReplyDelete
Here is a video I saw years ago that reminded me of your situation. Don't know if you've already seen it. There is another that I can't find now but will keep looking. Thank you from all of us who appreciate your candid observations! Diane http://www.iptv.org/video/detail.cfm/17511/kpbssandiego_20080222_extended_interview_with_alzheimersReplyDelete
It is a good video; I hadn't seen it; and his situation is quite similar to mine. Thanks for letting us know about it. One important difference is that his illness occurred before the availability of brain scans (PET Amyvid) that, while certainly not perfect, can tell us a lot about early disease.Delete
Excellent work has been done on neuroplasticty that can subtract 30+ years on a brain (at any age).ReplyDelete
Check out the book "The Brain the Changes Itself" [Dr. Norman Doidge]
At my dentist's suggestion, I did read Dr Doidge's "The Brain That Heals Itself." It's a very interesting book and the subject of neuro-plasticity is a new and quite exciting development in many areas. Unfortunately, he mentions Alzheimer's only briefly and gives no evidence that the brain can regenerate itself meaningfully in the context of Alzheimer's disease.Delete
I am really intolerant of the unknown, so I admire your calm perspective at this point. But your experiences early on, which you've so carefully and clearly outlined for us in earlier posts, certainly seem to indicate some sort of cognitive disfunction. Maybe you should try doing the books at church again!ReplyDelete
This post particularly hit me for another reason, other than my dislike of the unknown (I wonder if that's why I taught math?). I am getting a pacemaker on Wednesday, assuming the snow doesn't keep us from getting to Rochester; but most days I really feel great -- lots of energy and lots of things to get done. Then I wonder if I really need this thing -- until I have a down day and the pulse doesn't move above 35. So I'm sympathizing with your unknowing, because I am unknowing. I'm going ahead with it, and I'm told I will be amazed at how much better I feel, but still, I wonder . . . .
Judy, the pacemaker surgery is like having dental surgery. I had it done last year and I went to a birthday dinner two days after the implantation. And it is true...I no longer needed to take naps during g the day because I no longer has bradycardia. The fact is that you and I could have died in our sleep from bradycardia!!!Delete
Gerry from Louisiana
Judy and Gerry, and Doc, of course, if anyone remembers I had a massive pulmonary embolism last month, helicoptered to Sioux Falls, three days in intensive care, a major health scare. And after I got back home, I noticed much more enjoyment of the little things in my life. And its still there. I enjoy watching the birds fly, the dogs bark, the funny things around me that I never really noticed before. In some ways, its been a blessing. I'm just hoping I never lose this enjoyment of life.Delete
It's so important for any of us to remember that what we experience is simply the human condition. Uncertainty is part of life; an unpleasant part for many of us, but the uncertainty is what we've been given to work with.Delete
I'm learning so much from all of you. Thank you for sharing your experiences. Because of your courage to be transparent, you will inform my future experience- with uncertainty, my body, my health, my every here and now- translating to more joy, and I am grateful. xoReplyDelete
Is there any chance more oxygen might improve brain function?ReplyDelete
David: I thank you for sharing your thoughts and feelings. Accepting uncertainty and the unknown is difficult, it means letting go of fear and trusting in oneself. Letting go of things we cannot control. Embracing what we have that is special and meaningful, embracing simplicity, rediscovering the simple beauties of life--the breezes, sunshine, wind, clouds, scents of flowers, bird songs, childrens' laughter, pet's cuddles.ReplyDelete
Knowing something is wrong and not having it 'documented' by medical testing can be very frustrating and, sometimes, enraging, at least it was for me. Especially when doctors sometimes go by strictly test results and not examination and observation.
I searched for answers for years, to no avail. Doctors stopped listening and hearing. I never felt guilty, just devalued, unheard, alone. And then I just let it be, stop living my life in doctors' offices.
I live in pain much of the time, in solitude much of the time, but in peace most of the time.
And I remember to love those people and things important to me, and help those I can when I am able.
I live in pain much of the time, in solitude much of the time, but in peace most of the time. quote from Little Bird.ReplyDelete
Ditto on the first two, cannot reach the last. The little bit of life left to me is not enough, and, on top of the pain, I have a cognitive decline that is downgraded by my doctor, devastating to me. Because I was very bright, I still seem to have a lot compared to others. But I don't compare myself to others, just to the person I once was.
I have given up a lot because I have no choice: house is messy, personal care slipping, easiest to stay home, easiest of all is sitting on the couch and reading. But I continue to assume responsibility for meals which includes making choices and shopping for food, trying to keep a budget, very necessary in my continuing economic downturn.
I meditate, I pray, I push myself "up", try to deny misery, but, at 75, I am running out of my own self as a source for assistance, am separate by a country from family, have no children, and negativity keeps punching me on the head, in the neck, back, hands, feet, and all points in between.
Little bird, how did you reach that peace?
Hi Helen: What you describe is so very similar to my life as it is now....My heart goes out to you.Delete
"in peace most of the time". Sometimes I cannot find it, it can be so very hard. If I focus on my losses--ruined medical career from adverse medical treatments just as it was starting, complete family rejection ("you don't want to work, we are not going to help you when you need it"), loss of many best friends over the years as they do not know what to 'do' with me and they got on with their lives, I get severely depressed.
I think the aloneness is the hardest thing for me, not the pain or weakness. It makes me feel invisible.
One never dreams of being in pain, alone, struggling on a lower income, in a tiny space in one's older years. Children don't say that's what they want when they grow up...
I saw a psychologist. He practiced Buddhism. He taught me how to meditate, how to be in the moment, how to let go of so much misery, how to let go of the past, how to understand that people change and are not who they were when we remember happier times, how to embrace the simple things, how to accept.
I still fall in what I call 'potholes', some shallow, some very deep. Sometimes it takes a lot of tears and hard work to climb out.
I started learning creative things like origami, how to grow simple plants. I bought a camera. I try to walk a bit when I can and take pictures. I draw primitive pictures. I write very amateur poems. And I read some books. About Buddhist philosophy. I am not a practicing Buddhist, but I find some of the ways of thinking about things useful. There is one book I really benefited from, "Letting go of the person you used to be", by Lama Surya Das. He has written several books I have enjoyed.
Buddhism teaches gratefulness and enjoying other's joys. Not always easy, but can be quite healing at that moment.
I also recently discovered some incredible meditation recordings from LifeFlow. They have a 14 minute demo one can download. It is wonderful. Helps me sleep (I have very painful sleep disorders, am always sleep deprived), helps me just be calm.
My best answer for me? I try to refocus. I live in a tiny apartment, with a patio. That patio, with its plants and hummingbirds is my sanctuary. So peaceful, watching the leaves on the trees blow, watching the clouds drift, drinking some special tea, just 'being'. I also have two cats to talk to and love.
Lastly, I try to help others. Even something as simple as making a phone call for them.
My peace is shaky. It can be a pleasant peace, or a lonely peace. Good days, hard days.
I hope this helps even a tiny bit.
Thank you for your honesty ... It's important for people like me to hesr what you have to sayDelete
Thank you. You are so kind. I have a bit more to say--I left some things out, am working on it. I am just writing what helps me sometimes. I am still learning, always learning, not always remembering as clearly.Delete
I am so grateful I discovered this site. I feel less alone.
As winter approaches, the darkness seems darker than last year. The birds have flown the coup, my plants wither. I still have my 'tree of life' just outside my balcony. I call it my "Old Man Tree", because to the beautiful markings on the trunk.
Time for my music, I think.
Little Bird: The pain of your condition is so well expressed and heart-breaking. But you have also found ways to work with the pain. That may not remove the pain, but helps you live with it, which, in the end, all of us must learn to do.Delete
Hi David--I've left comments before and I enjoy your blog and find it quite interesting. David-you're a doctor, an MD--you know full well there is no test for Alzheimer's no matter what tests they try to run on you--how many brain scans you have. They can't even diagnosis without an autopsy. Like Helen, I was very bright in my 30's--went to college and made straight A's. Then, in my 40's, I noticed I just wasn't as sharp as I once was. Because of a couple of minor injuries to my head, a therapist suggested some psychological testing, which I undertook. The result was that I was very high functioning. But it was still quite frustrating. Where did that sharp young woman go? Now I'm in my mid-fifties--that even sounds weird--and I notice the regular decline of my cognitive abilities. My mom passed at 66 with what they diagnosed as Alzheimer's but her symptoms were even different from all the other Alz patients I encountered. She was never combative or belligerent like so many others. She just peacefully drifted into the nether regions until she finally forgot how to eat. It was pitiful and heartbreaking for us, her family, but she was blissfully ignorant and passed quite peacefully in my arms--way too young! I guess my point is, David--you may NEVER get a diagnosis and what does it really matter? It's not like they can treat you with anything. Just continue to enjoy what time you have left--that's all any of us have...Thanks for continuing to post. Cindy, Monroe, LAReplyDelete
Ultimately, you're absolutely correct: uncertainty will continue to dog all of us and we can "just continue to enjoy what time you have left--that's all any of us have."
While certainly not perfect, these new PET scans show a great deal of promise in making a diagnosis of Alzheimer's before autopsy. The can now look in the living brain and actually see the amylase plaques that are diagnostic when seen on autopsy. So we're getting to the place where diagnosis should be a lot easier and more straightforward.
AWESOME! What a journey you've been on and what a beautiful place for you to be now.ReplyDelete
David: On Amtrak! How fun and simple. Has me humming an old folk song, City of New Orleans, Arlo Guthrie.ReplyDelete
I hope you enjoy the sights and share your experiences of your journey.
I love your website, feels so warm and safe.
David: Thank you for your wise thoughts in your reply above. It reminds me of what I learned, but sometimes forget. We all have pain, and we can learn how to accept it or we can suffer. Pain might be our reality, but whether we suffer or find a way to allow the pain and keep going in a meaningful way is a choice we can make.ReplyDelete
I have fallen into a deep pothole, caught by surprise. In the 'adventure' of trying to make my apartment into a bit more of a home/nest, it has become a difficult chore. The fun and anticipation have left me. I feel overwhelmed, paralyzed, unable to make progress. The things I replaced seem so cold and ugly (electronics) and things added for comfort seem just to 'be there' . It is a mess, not a clean, uncluttered place.
Part of my simplicity was not spending all my time online. It has been unavoidable. I feel the need to let go and disconnect to get some peace back.
The darkness of the days and time change also slammed me. Looking into SAD lights, but so expensive.
It seems like I am working so hard at all this and have gotten nowhere. Makes med. school, residency seem like a piece of cake. The smallest of decisions seem so monumental.
I am babbling and will stop. Hopefully will climb out of this pothole soon. Maybe 'pothole' has been my word for periods in which I forget what I have learned and suffer......Wonder what others do when this happens?