Thanksgiving in Minnesota
I’m finding it difficult to come up with material for this blog. I think it’s a form of writer’s block.
I suspect it has to do with my fixation on the scientifically determined medical diagnosis. For those of you who haven’t been following this blog, all my objective tests for causes, or even for cognitive impairment itself, have been normal, yet I’m still convinced it’s Alzheimer’s:
· I know I’m impaired;
· 80% of all people with cognitive impairment have Alzheimer’s;
· the pattern of my symptoms is typical of Alzheimer’s;
· my medical tests have shown no evidence for any other cause of cognitive impairment;
· therefore, I’m convinced, the likelihood of Alzheimer’s disease is high.
So I’m comfortable referring to my cognitive impairment as Alzheimer’s as long as I can take a few minutes to explain the scientific uncertainty of the diagnosis. But what do I do in a two-minute explanation? How do I refer to myself in a posting here for someone who might be visiting for the first time?
My discomfort, I think, comes from the fact that when I was practicing as a physician, my patients expected me to confirm their diagnosis scientifically. I was certainly aware that medical testing could be in error, so—if the science couldn’t explain their symptoms—I didn’t discount their experience, but my job, nevertheless, was to report the scientific facts. If the science and the patient’s symptoms didn’t agree, my job was to describe the discrepancy (usually at length) and give an opinion, not to make an absolute judgment. So, in those cases, I always felt the longer explanation was always necessary.
Furthermore, honesty is almost an absolute value for me, and saying, “I have Alzheimer’s” when the objective testing suggests otherwise feels misleading. Yet, if I describe my illness in the elevator version as a “subjective cognitive impairment,” almost no one’s going to understand what I’m talking about, so such a description is misleading, too. So, in fact, describing myself as having Alzheimer’s is less misleading. Nevertheless, I’m emotionally uncomfortable without the qualification.
I believe I need to get over my qualms. I will change the introduction to the blog and to my website to reflect the uncertainty, but, despite my discomfort, I’ll include the word “Alzheimer’s” in my two-minute, elevator version.
I hope that getting over my irrational scruples will help break this writer’s block.
I remain grateful for the support so many of you have expressed.
 There are several different groups (formally referred to as “domains) of symptoms of cognitive impairment such as loss of memory (amnestic cognitive impairment); impairment of visual-perceptual skills; difficulties in concentration; general slowing of mental capacities (for example; taking long to do things, trouble following recipes or keeping track of bills); language problems (for instance, word finding), and challenges in executive function (for example, in planning or in solving problems).
Have you heard of the peanut butter alzheimer test? It was mentioned in USA Today a few months ago http://www.usatoday.com/story/news/nation/2013/10/10/newser-alzheimers-peanut-butter/2961393/. Basically people with a confirmed diagnosis of early-stage Alzheimer's could smell it fine with their right nostril, but not their left. I thought of you when I read that article and wanted to pass it along to you.ReplyDelete
It's ok to take a break, or tell us about other things! :-) Maybe that'd help break the block.ReplyDelete
My husband has "finally" been diagnosed as having Lewy Body Dementia. His symptoms never quite fit that of Alzheimer's but fit almost exactly with Lewy Body Dementia. The book recommended earlier on one of your blogs, Caregivers Guide to Lewy Body Dementia by Whitworth & Whitworth has been a terrific help in recognizing and dealing with the issues related to this disease. Perhaps it would help to investigate the various types of Lewy Body Dementias to see if they fit your profile as well. Like you, none of the scans/x-rays showed anything definitive about Alzheimer's but he continued to exhibit out of character symptoms. As I came to learn later, it's very important to identify the cause of the symptoms being shown as medications and social situations make a big difference and in some cases the wrong medicines administered unknowingly to some patients with Lewy Body Dementia can be fatal.ReplyDelete
Thanks for the reminder. With all the emphasis on Alzheimer's disease, it's important to remember that 20% of dementias are due to other causes. One of those is Lewy Body Dementia (LBD), which few people have heard of. The "Lewy Body" refers to particular changes in brain cells that can also be seen in Parkinson's disease. Like Alzheimer's diagnosis is only certain upon autopsy. While symptoms of all dementias can overlap, the usual initial symptoms include: fluctuating attention and concentration, recurrent well-formed visual hallucinations, and physical signs of Parkinson's disease. While it's always possible that I have LBD (since symptoms can always overlap), I don't have any of the LBD symptoms, so it's less likely.Delete
More information is available at: http://www.lbda.org/node/470
If it's an elevator version you need. You could simply say, "I have SCC."ReplyDelete
If asked what that is, you can simply answer Subjective Cognitive Complaint. You might not get asked another question, but if you do you could add that it's different from but almost indistinguishable from Alzheimer's.
By then, most people would be satisfied. If not, you could go on about your specific case if were in the mood to educate someone that day; however, I suspect that you might like to change the subject sometimes. If so, your listener might take the hint if you said, "Now, why don't we talk about the weather?"
But what a dreadful label for a diagnosis: It makes the sufferers sound like a bunch of wishy-washy nutters who have to complain about it. It certainly doesn't make it sound serious or as debilitating or frustrating as it obviously is. Might even make people think that it's all in their head...touche.
Having had "minor cognitive impairment" for over 25 years, as a higher education administrator, and now with "aging' kicking in, there are noticeable differences seen by friends and colleagues (altho officially retired now.) I often just say to "unknowns" around me, "I have some cognitive problems, so could you slow down a minute," or "Could you help me with something". Anyone who "needs to know" (colleagues, new friends, etc.) can just get a similar "I have some cognitive problems, but I have built some systems to work around them." If they want more detail, they can "Google" MCI. [Used to joke with my late spouse; If I ever don't recognize you, don't take it personally!"] Working with medical people for "official" diagnosis is a different, issue, of course,for future planning. Best wishes in any case, and thanks for your great columns.ReplyDelete
I agree. A sense of humor and the humility to ask for a little help are great assets if you have this diagnosis (or even if you don't).Delete
So far my experience as a caregiver for my husband with mild cognitive impairment, and now a severe brain injury, has been that there is a lot of uncertainty around diagnosis. I think by the time scans show anything and doctors are ready to commit, the diagnosis will be very obvious to everyone involved.ReplyDelete
So while your lack of diagnosis and uncertainty must be extremely frustrating for you, your blog helps those of us also struggling to describe our situation. In a strange way the brain injury has made it easier at least in terms of having a label to help others understand, and to help my husband accept that there is an issue we need to work around.
I can really appreciate your need for a label that is honest and simple. Perhaps just mild cognitive impairment? No one needs the details re diagnosis or prognosis, especially as you yourself don't have those.
Your equanimity is intriguing and a blessing. My husband struggles every day to achieve that.
I'm hearing from quite a few people about the uncertainty in their own individual situations, so I'm encouraged that writing about the uncertainties in my case might be helpful.Delete
Everyone gets writer's block, even when doing something like writing a family letter about events in one's life or adding a note inside a birthday card. If you need a little time off from posting, take it. Your blog, as important as it is to you and to your readers, isn't supposed to be a job. It's "a work in progress," but not meant to have a daily or weekly deadline. We'll still be here waiting for your thoughts and feelings. My opinion is that you are pushing yourself too hard right now. Enjoy the Amtrak trip. When you get home, perhaps the juices will flow. If not, kick back and just enjoy kicking back.
I'm pretty sure everyone who replies has moments of "What do I say now? I know there's more I want to add. Did I say it the way my mind thought the thought? Will David read what I think I said and understand I really meant? I sure did. It's taken me almost an hour to type these few words, but I really wanted to connect with you. You're very kind and compassionate about sharing your situation with us. Thank you.
P.S. I don't know how to do the profile thing to send this, so I'll try again using anonymous, but my name is Christopher.
Thanks for writing, Christopher. My wife Marja says the same thing about not making this into a job. I do my best to listen.Delete
I Was wondering if you could have had a drug interaction? My cousin was given levaquin for an infection and was diagnosed with post-partum psychosis because of her confusion, numbness, and memory and attention issues. She strongly protested this diagnosis and it took two years before she realized she was "floxxedReplyDelete
She continues to have moderate to severe issues although it comes and goes- mostly causing confusion, inability to focus, and lapses in memory.ReplyDelete
Dementia diagnosis is frustrating as a patient or caregiver or spouse. Often no physical tests show any problems. I am including brain scans, blood tests, thyroid tests and others. It would be nice if brain scans were a lot more detailed and could reveal more information. Neuropsych testing by a neuropsychologist familiar with different dementia's still seems to be one of the best methods of finding a dx. Though doctors are reluctant to give a dementia dx because it is terminal and they cannot do much about it, so they want to rule out every other cause for any problems.ReplyDelete
For all of the reasons related in all of these posts and comments, my husband has not been tested. He is 77; he has memory loss; he gets lost in some places; he gets frustrated when he can no longer "fix" things;ReplyDelete
his family has dementia; there is no cure and he knows it. He is an internist and he was known for his diagnostic acumen. He knows what is going on, because he has watched it for the past five years as it progressed. We have been open with our friends and family. At least he does not have chronic pain!
He and I have faced this new challenge head on and we are enjoying this new life....just BEING with no need for accomplishments or approval. This blog has become our textbook and our source for living. We are blessed.
Gerry and Jerry in Louisiana
I just call it "Old Timers".ReplyDelete
There are so many different forms of cognitive difficulties. Pick's disease comes to mind. I once took care of an ex Alaskan Bush pilot, diagnosed because he would come visit his Mother and sit and cry, definitely not normal for him. Atheroschlerosis, parkinson's, there are many.ReplyDelete
I sometimes wonder when I read about your diagnoses, that (now don't get a big head here) doctors spend so much time cataloging symptoms and trying to match it up. its almost a mechanical computation in their head. I don't want to make doctor's heads grow, but when diagnosing, doctors are really quite amazing in how they monitor symptoms. So they are doing more computing than the normal person. Probably you have slowed down to normal. From fast computing to normal every day person. And it feels to you like its a difficulty. You're just not used to computing like regular people. Its a different mindset, a different way of thinking. I know as a nurse, I checked things differently than I would now. three years out of nursing. You probably do have some cognitive difficulty, as we all do when we age. And a whole bunch of us are going to end up with dementia of some sort. Just a thought.
With all the possibilities, including normal aging, that are unknowable at this point, I've pretty much let go knowing or thinking what it is. My best guess is Alzheimer's disease, but uncertainty is the major characteristic of whatever this is.Delete
Perhaps I'm reading your post as being somewhat other than what others see (or, perhaps what you intended). It appears to me that you are searching for a short, truthful way to describe to a lay person, or casual acquaintance, just what is going on without getting technical or drawn out. My suggestion is to say that you have some of the symptoms of an early form of Alzheimer's Disease. It is not pinning down a diagnosis, nor is it defining with specificity exactly what is going on. For the casual or lay acquaintance, that should be good enough.ReplyDelete
Seems a good idea to me. Thank you.Delete