Several people with early Alzheimer’s disease have left comments on this blog. They’ve known their diagnosis for several years and their symptoms often go back a year or two before their diagnosis. They’re all still able to use the computer, obviously, and, according to their reports, are functioning pretty well in day-to-day life. I’m beginning to realize that this early phase of the disease can go on for quite a while.
Jim Landry, for instance, lives in nearby Maryland, so we got together a couple of days ago to meet and compare stories. He has known of his diagnosis for over two years. We talked for two hours, and he told me about a number of examples of his cognitive impairment, for instance, the inability to calculate even fairly simple arithmetic, difficulty in word finding, and his reluctance to drive anywhere except very locally. (He gets confused too easily if the traffic is at all heavy). I was, of course, looking for impairments as we talked, but the only one I actually noticed was the trouble with word-finding. He was skilled enough at substituting other words, however, that I wouldn’t have noticed unless I’d been specifically listening for it. Even paying attention, I noticed only that his substitutions were not always exact synonyms for the words he was looking for. Ordinarily no one would notice his impairment.
So in most situations, he, like me, can “pass” in day-to-day interactions with other people. He has been completely “out” (the vocabulary around homosexuality is quite intentional) about his diagnosis and can’t imagine doing it any other way. He’s found no reason to regret his openness. He did have to leave his professional job because of his difficulties with memory, but that was before his actual diagnosis; his job loss was from his impairment not from his going public.
A person who comments here frequently, “meganthemegan” reports that she gets lost quite easily but is quite comfortable asking people for help; she has trouble with social etiquette (eg using the F-word inappropriately); she can’t do basic arithmetic, and so on. But she’s also developed a number of coping mechanisms that help her get about: becoming a “neat freak” so she can find things, writing very explicit notes to remember things, recording voice notes on her smartphone, and so on. (The voice notes have been a wonderful suggestion that I’ve taken up; I’m not fast enough on the smartphone to write things down in a reasonable amount of time, but when something comes up in a normal conversation that I need to remember, I can dictate it pretty quickly. When I get home, I process my notes.)
Her comments to this blog are written with no evidence of cognitive impairment. She obviously gets around in her environment and can relate well to her friends. By her own report, she’s impaired but she’s fully with us. She writes, "
I've given up on names and math and being a well-behaved woman. I have become better at rolling my eyes and shrugging my shoulders while smiling. …I have also experienced the incredible fullness of “present moments” -- love and fear, expansion and contraction. I am reminded of Rilke's words:
“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
I’m writing about these two people in part because theirs are just beautiful stories. But they are also an indication that “real life” can go on for a long time after diagnosis. I talked on Skype to a guy who’s had Alzheimer’s for ten years and I couldn’t detect any impairment. I myself have declined so gradually since my diagnosis last September that daily functioning seems even to me almost normal.
The implication is that the progression of my Alzheimer’s will probably be slower than I’d originally thought: I may be around for a good long time.
So that’s good!
Initially, this realization brought up the question: So now what do I do with the rest of my life? I’ve gotten to thinking of myself as a “professional Alzheimer’s patient” (with this blog, media coverage, speeches, and so on). I’ve been subconsciously assuming that that role and my calling to “out” Alzheimer’s would occupy the rest of my life, and that would be enough! But now there’s much more life to occupy.
But the question of what I’ll do is really unnecessary. This is a waiting period, and the future will show itself of its own accord. (One of the joys of this disease, actually, has been much freedom from worrying about what I “should” do.) I have the diagnosis; I know the basic outline of what’s coming. I have the truly important things—relationships, community, love, meaning, an appreciation of the world’s beauty—and they will remain. I’ve entered into a strange world as an increasingly mentally challenged person. Apparently it’s going to drag out longer than I thought, but I’m still very curious. It’s quite a journey!
Again, I’d be greatly interested in hearing from you with a relatively early diagnosis. If you ever think about it, what do you envision for the next few years?
Hi David. Very interesting blog and i'm sure that i'm attracted to it by my fear of alzhiemers. Just an hour ago my wife tells me she wants to have a serious talk and she wants me to go to my doctor to try to find out why my memorys gotten bad lately.I've noticed too. I could not remember taking a certain medication a few years back and i have trouble finding words in conversation and quite a few other things. I'm 62 and broke my neck 1 1/2 years ago by a violent collision between my head and the ground.How do you know when its time to go see a doctor about memory worries and how do doctors determine if there is a problem. Thanks.SteveReplyDelete
The easy answer is that you get checked out when you first start asking yourself the question of whether you ought to get checked out. If your wife has noticed, it definitely time to get checked out.
It’s never a question for me, but you have to ask yourself, do I want to know? For me it’s not really a question since reality is always easier for me to deal with than uncertainty about reality. I don't like nagging doubts. And there are practical issues. a) There are some kinds of cognitive impairment that are treatable, more treatable the earlier you know about them; b) even if a diagnosis can’t be made now, having a baseline cognitive test can be valuable for later on if things seem to be getting worse; c) there are some practical questions that need to be dealt with early, eg questions about Medicaid (see my posts “Medicaid” in October and “Legal Stuff” in January); d) personally, I want to let other people know before they start having questions (with the stigmas attached to it, friends who notice it are likely not to say anything and, perhaps, withdraw because they don’t know how to deal with it.
If I were in your situation it would be time for a check-up, preferably with a neurologist (and that advice is from an ex-Family Physician).
Thank you for asking.
I'm curious about one particular thing: Steve mentioned in the earlier post that he had a collision and a bad injury. I remember hearing or reading once that the onset of Alzheimer's often came following some major physical setback..heart attack, surgery etc. Have you found that to be the case?Delete
My husband, age 67, has had multiple health problems and hospitalizations and recently suffered his 4th heart attack. I have noticed in the weeks that ensued that he definitely is not remembering things, events, words etc as well as he once did.
My mother had a triple bypass and within the year was exhibiting symptoms and eventually died of Alzheimer's.
Has there been any research to this respect? Cathy
Alzheimer's is a disease that takes 20-25 years to develop so it's unlikely that a traumatic event could cause it. There are a couple of possible explanations: 1) It's another kind of dementia. For instance there is "multi-infarct dementia" from lots of little strokes that could be associated with some of the problems you mention; 2) Certainly after major trauma there can be cognitive impairment that's not due to Alzheimer's. Lots of different things (toxins, poor blood supply to the head, head injury could mimic Alzheimer's, at least for a while. 3) It could also be coincidence. Alzheimer's is very common, especially in the elderly, so it's very possible she had Alzheimer's before the surgery, but the trauma of the surgery (anesthetic, recovery, being in bed, etc) could have brought the symptoms out more clearly.
David I also have had this for 10 years. I was as nervous as you then; but now, I am like the guy you skyped with. Diagnosed in 2002 at 53 yrs old after an auto accident and a stroke. After you stop thinking about death 24/7 you can find what I sense you may be realizing.......life goes. I will be 64 next month and I plan to fight this to the very end. Yes, I have bad days, but, I know I have never had one that could not have been worse. I hope I make sense. Stay encouraged.ReplyDelete
I have been told I seem fine. Society thinks we ought to be dragging one leg or looking strange to be sick; I think that's sick. I refuse to be embarrassed or ashamed about something I did not do to myself. I did not choose my sex, race or parents either.
Thank you,David for giving us your inside look at alzheimer's.
I think it would be a real service to the rest of us if you would take Arle Hagburg's (4-21-13)suggestion and look at the research and experience of Dr. Abram Hoffer, MD, Ph.D. He wrote about his over 50 years of experience of using Niacin for many conditions, including alzheimer's. His observations are included in a 2012 book by Andrew Saul, "Niacin, the Real Story". Many people could be helped by using his expertise and that of the physicians who use his approach to help their patients.
I hope to write a post in a little while on why I don't personally follow up on treatments like those suggested by Dr Hoffer. I am no researcher or statistician so I wouldn't be able to offer any greater insight or better evaluation of Dr Hoffer's research than anyone else.Delete
This missive is aimed at those readers, who like me, have a family member with Alzheimer's.Delete
What can I do to help my mother who is suffering from this disease? How should I react to her memory lapses and her erratic behaviour?
Any insight or tips would be appreciated. Thank you.
The website www.AgingCare.com is specifically devoted to caregivers for Alzheimer's patients. You might also check into the Alzheimer's Association www.alz.org can also be helpful. In fact, in addition to all the support on their site, they will be able to refer you to a support group for caregivers that meets in your area. Good luck.Delete