Washington
DC
When, in conversation with another person about my Alzheimer’s,
I mention one of my particularly frustrating symptoms, they’ll often respond
with something like, “Yeah, I know what you mean; I’ve been getting a lot more
forgetful, too.”
It drives me nuts.
Usually, I just let the comment pass, but it most
often feels like a dismissal of my diagnosis, as if to say, “Everybody gets
like that sometimes; don’t take it so seriously.” It irritates me, so I list a few of my more
abnormal symptoms to shut the person up.
But sometimes they’ll respond to that by saying something like, “Well,
you said you’re not 100% sure you have Alzheimer’s, didn’t you? It could be something else, right?”
Yes, it could be
something else. But it’s not. I can’t blame my friends; they’re just trying
to be optimistic or make me feel better or, perhaps, shield themselves from the
fear of the disease. Or maybe they’re
just trying to make sense of the disease, to understand what I’m going through and
I’m just being overly sensitive.
As I’ve written before, a definitive diagnosis of
Alzheimer’s disease can only be made at autopsy. In clinical practice, however, the diagnosis
is made by testing for dementia using a cognitive function test and then ruling
out other causes of that dementia (see my post “Research”). For some of us with early disease, however,
we don’t even meet the official criteria for dementia, which, in practice,
usually means a score of less than twenty-five out of thirty questions on the
Montreal Cognitive Assessment (MoCA). Those
of us who score between twenty-five and thirty are given the diagnosis of “mild cognitive impairment”
(MCI). If the other causes of dementia have
been ruled out, however, MCI virtually always progresses to Alzheimer’s.
So do I always feel absolutely certain? Well, mostly I do. My personal neurologist believes my MCI will
progress to dementia, as does the research neurologist I’ve asked. At an intellectual level, I’m convinced this
is Alzheimer’s disease. But am I
absolutely, 100% certain? No.
And that little bit of uncertainty makes this
difficult disease even more difficult.
As a doctor, I understand that in medicine almost nothing is
certain. Sometimes we just have to wait
and see. But, even so, the three years since
my first symptoms feels like a long period to wait.
Most neurologists, I suspect, don’t mention
Alzheimer’s to people with early MCI unless they ask. At my first visit almost two years ago, my
neurologist told me about my score of twenty-seven but—perhaps noting that I hadn’t
asked—didn’t specifically mention Alzheimer’s.
That I—a guy who always wants the details—didn’t ask specific questions
after missing three questions on the MoCA surprises me. Perhaps it indicates my own fear of the
disease at that time.
I have a lot of confidence in my neurologist, and,
when I asked about Alzheimer’s at my visit this past September, he was candid saying
that he thought my MCI would progress to Alzheimer’s.
There’s really no way around this dilemma of
uncertainty, but it raises uncomfortable issues for those of us with mild
cognitive impairment. We ask ourselves questions like:
- What’s really going on?
- If it’s not Alzheimer’s, what else is it?
- If I’m not 100% sure, do I inform my friends, anyway (much less go public with a blog and newspaper interviews)?
- Do I go into all the details of MCI vs Alzheimer’s every time someone questions my diagnosis?
- Do I take the major steps to reorganize my finances (see Medicaid)?
- If my job requires a high level of cognitive ability, do I quit now or wait to make a serious mistake or have my boss fire me?
- Should I apply for disability?
- Should I get started on my “bucket list”?
- What kind of advance directives should I make?
Obviously, some people would rather not know and
deliberately avoid the diagnosis. Others
move into active denial, perhaps never facing their reality. But for those of us who want to know what’s
happening to us, why we’re forgetting so much, why we’ve declined
intellectually, the uncertainty can wear us down.
I’d be interested whether others with who are in the
early stages of Alzheimer’s find this limbo nerve-wracking.
[ The comments section on this particular post are, I think, very helpful, so it might be well to browse through them.]
[ The comments section on this particular post are, I think, very helpful, so it might be well to browse through them.]
I can't respond to your final question about whether this particular limbo is nerve-wracking. But I can note that people's tendency to discount a diagnosis by noting how they have experienced something similar (in their mind, at least) is not unique to Alzheimer's. I have a brittle bone disease, as does my daughter. Between us, we've had four dozen fractures, most of them caused by routine stuff, not even falls in some cases. So it's incredibly annoying when people respond to this news by saying, "Oh yeah, I broke my leg once and needed surgery." Ummmmm.....your experience was nothing like ours, I'm afraid. I think it's yet another way that people try to deal with painful things that they don't know how to deal with. Instead of just being present, they offer solutions or compare experiences--anything to minimize the discomfort of being faced with a type of suffering that scares them.
ReplyDeleteI can't speak for anyone else, but when I compare a problem I had with that of someone with a serious ailment, I am not uncomfortable or unable to deal with the issue. I am simply showing empathy with their situation and trying to make them see that others have these problems to a greater or lesser degree, and that I am trying to feel their frustration with their health.
ReplyDeleteThere's no way, of course, in any individual case to impute motivations to you or anyone else. I can't, of course, speak for Ellen. What I was trying to say in my post was that that comparing your normal forgetfulness to my forgetfulness that comes from disease that is slowly consuming my brain leads easily to a sense in me that I am not being understood, a feeling that my symptoms are trivial. I'm sure most people don't intend that. Part of it for me, too, is what we (before the age of ethnic sensitivity) used to call the Chinese Water Torture: One drop isn't so bad, but when person after person responds to my complaints as if they were the same as their complaints, it feels like the seriousness of my disease is being dismissed.
DeleteI understand. I'm going to have to be more aware of the effect on others when there is a good chance that others probably repeat what I say. I don't normally see this side of any illness. It is very few illnesses in which the symptoms are only normal problems which are amplified.
DeleteIs there some acceptable response to, for example, your complaint about being much more forgetful than you used to be? It would be nice to not have to ignore such a statement because of a desire not to irritate you.
Perhaps there is an alternative to you remarking about your symptoms and making people focus on your, for example, forgetfulness where they may not have noticed anything amiss.
Is there some acceptable response to my complaint of forgetfulness? An obvious question but one I hadn't really considered. I think it would depend on context.
DeleteMost of the time, it doesn't matter. When it's difficult for me is when I'm trying to describe my Alzheimer's disease, to explore it, to communicate to you what it's like. In that conversation I want you to listen closely enough to know how it's different from your forgetfulness. So just continue to listen or ask a question, but realize that under those circumstances, telling me about your forgetfulness feels dismissive.
I don't know if that's helpful.
Thank you for the clarification. I will be a better listener.
DeleteI have migraine. When people say "oh, I get headaches, too", I mentally roll my eyes. I am sure they intend to be empathic, but a headache is not a migraine. It's a conundrum, because we don't want to turn away well-meaning friends, but it does get old. Yes, I agree, David--telling me about your occasional headache feels dismissive of my light sensitivity, inability to work or eat, move, listen, etc., which I've dealt with since early childhood...especially if you are my boss and I need to go home sick. It makes me feel you think I'm shirking. Signed, Pam, also posting today as Anonymous but now coming "out"
DeleteYou may already know of it, but my friend Carol Marsh has a website specifically for people with migraines http://painandspirituality.blogspot.com. You might be interested. Carol and I have talked about this with her migraines and my Alzheimer's. Most of the time, I just shrug. Other times I try to explain. Occasionally, I suggest that they get checked out for AD.
DeleteHey David. This post leads me to a question that you may have already answered. If so, feel free to point me to that post.
ReplyDeleteSince Alz is really diagnosed in the end, what were the symptoms that caused you to seek medical attention? That score seems pretty high.
I think other's responses are just their own fears honestly, as in I forget things too. They don't realize that in true Alzheimers patients, they aren't necessarily forgetting, but that there is a loss of brain function. Much different than where's my keys!
This blog helps me understand this disease much more, so thanks for being so open.
Hi, Angie:
DeleteRather than recount the history of my diagnosis here, let me refer you to my September post "Now It Begins" or for a more complete account, go to my website www.davidhilfiker.com, click on "My Alzheimer's," then click on "Beginnings," then on "Before the diagnosis."
The score of 27 out of 30 may seem like a high score, but this is a test in which the normal person of normal intelligence should almost always get a full thirty. It's a test for cognitive IMPAIRMENT, so ANY wrong answers indicate a problem. This is especially true for people of high intelligence (which I used to be).
I think you're right about why people would compare Alzheimer's forgetfulness to theirs. At least one reason is that most of us are terrified of getting Alzheimer's and we're looking for reassurance. It's sort of magical thinking: If I can convince myself that you don't have it, then I probably don't, either.
Because doctors are so reluctant to make an Alzheimer’s diagnosis, I think you can trust that if your neurologist said it’s probably Alzheimer’s – it’s Alzheimer’s. Usually the official diagnosis is always “dementia probably of the Alzheimer’s type.” There is a now a PET Scan (AMYVID) which gives you the information that was once only available through autopsy. This scan quantifies the beta-amyloid plaques in the brain. If you have been diagnosed, via neuropsych tests (my husband took a battery of tests over 4 hours), with cognitive impairments and then test positive on an AMYVID Pet scan, there is no doubt. Unfortunately the scans are expensive and Medicare refused to approve them – therefore no insurance will cover them. So you have to have the resources to pay on your own. The reasoning Medicare declines to cover the scan - since there is no treatment, what difference would an expensive scan make? They don’t care about the psychological implications of the uncertainty in dealing with career, family, and financial planning. All I could think when I was watching the Medicare approval hearing was – I sure hope none of you have to deal with this in your own lives one day – then they’ll understand.
ReplyDeleteI understand your frustration with other people's comments; I get the same from folks regarding my husband. I think they are just trying to be positive and encouraging - though I know it can feel that they are diminshing your situation. Just keep telling yourself - they mean well...
I agree. I am absolutely certain they mean well. My understanding from a conversation with a research scientist is that even the Amyvid PET scan has its problems. A positive scan is indicative of Alzheimer's, but 20% of people with Alzheimer's have negative Amyvid PET scans. We're still in the early stages of understanding this disease.
DeleteYes, they do mean well...I'm sure of that. But one of the purposes of this blog is to educate people about Alzheimer's and I hope that the readers take away this important fact: equating your own forgetfulness (forgetting a name etc) to diagnosed Alzheimer's IS trivializing the patient's problem and their angst.
DeleteThis of course isn't the only illness that causes these comments. I can't count the number of times I've told someone of my husband's issues (I only bring it up if they ask) only to have them mention something they or a loved one went through that is so much less life threatening or scary. It is for that very reason that I usually reply to an inquiry about his health with something innocuous like "he's hanging in there."
It would be a wonderful thing if people would learn from this blog to avoid comparing their small lapses with Alzheimer's...it is hard to take.
'Nuff said. I hope that your comment and the first comment in this post by Ellen (who also has a disease that is sometimes trivialized) will help more of us to listen more closely to what people with serious diseases are saying and recognize that they are not just chatting and are trying to share a significant part of themselves that should not be discounted.
DeleteThanks for writing.
I know how that feels when someone says, "Oh I do that too!" I have narcolepsy. Most of my life, I have fallen asleep immediately after the movie started, I turned the first page on a book (I'll never know how I passed nursing school). The only time my kids really got in trouble, I had dozed off on the couch. Anytime someone has an invisible illness, people want to sympathize, show you that its really okay, that lots of people have these problems. If I would tell someone, "I am so tired today." They will invariably say, "Oh, I didn't get much sleep last night. I'm tired too." One woman was working Baylor shifts (a double on saturday, a double on Sunday, and a single shift on Monday). After Monday's shift, she was leery eyed, leaning on the desk, exhausted, waiting for the elevator to open. and I told her "And that's how I feel when I walk in here to work." Which was a shock to her that there are people out walking around (and driving) in that situation.
ReplyDeleteI guess it doesn't matter whether its AD or any of the other kinds of dementia. The end result is the same with AD, Lewy body dementia, Picks disease and a few othes. The only one that may be different would be an atheroschlerosis, in which the veins in the head are hardened and causing small strokes, etc. If I had to choose the lesser of the evils, AD is better than most. Of course, as if we get to pick...........I would suggest a good accountant or attorney, who can direct you in how to save as much money as possible during the switch to medicaid. Even tho you may not need medicaid for quite a few years, some investments need to be because of a time limit. An example is "Have you given any of your money to your family members in the last 3 years?" If its before those 3 years, you have saved quite a bit of your investments for retirement.
Thanks, Lee Ann.
DeleteMedicaid changed its rules a while ago, so that the "look-back" period is now five years instead of three: You have to give your money away or make other arrangements at least five years before entering the nursing home in order for Medicaid to pay for it. (See my post "Medicaid" in October and "legal Stuff" in January.
One good thing about Alzheimer's is that if we know our diagnosis early, there is plenty of time to make such financial arrangements.
Your experience is very similar to that of my husband's. He also would get frustrated when people would remark that they couldn't remember things, that they couldn't tell he had a problem, etc. He was also very frustrated that his scores were so high that he wasn't eligible for any of the drug trials. He was very aware of his own deficits. His high scores and "lack of visible symptoms," he was told, were owing to his high cognitive reserve because of his long background as a professor, lecturer, researcher, writer. He was able to find alternative ways or a different word to fill in what he was forgetting. This served him well. I assume this is what you do as well. Your high cognitive reserve is serving you well.
ReplyDeleteI am similar to your husband in that I also tested too high for a clinical trial. Good news/bad news. I am bilingual and taught Spanish so the scores are not what would qualify as 'demented'. But the impact is there all the same. My symptoms began with problems writing/miswriting and speaking/misspeaking and math/arithmetic issues. Everyone thinks it is a 'memory' disease, and it is, but it is also a cognitive disease which erodes our abilities.
DeleteYes, it's most important to let people know that it's not just a memory disease, although difficulties with memory are, at the beginning, frequently the most notable. But there's lot more involved, and letting people know that can sometimes be helpful.
DeleteAs a 62 y.o. individual diagnosed with early onset AZ some two years ago, my friends seem to worry about it more than I do... I was accepting of it almost right from the beginning. (Having cheated death several times while serving in a 25 year military career, I have seen death up close and personal often enough that I became quite stoic about it... ie... when it is your time and your place, it IS your time and your place. God's grace and all...) Just today, I had lunch with my long term book-keeper and she went out of the way to say (again) that she has noticed little change in me. Other friends say the same... and yet... I can sometimes feel the disease on the edges of my mind it seems. My math and addition skills are not what they once were for example. My choice has been not to worry about my friends or what they say or feel. Perhaps they are saying it just to make me feel better or perhaps because they are scared of the disease claiming them as well. But again, I just shrug it off... and try to hold onto the reins of the horses I can still manage...
ReplyDeleteThank you, Ed.
DeleteWhat you write should remind us that everyone's course is different and not to have any particular expectation of how it's going to work out. It's wonderful, I think, when it's possible to go on with normal functioning, but it's also clear (as you imply and I have experienced) that many of us can "pass" as non-demented even when we notice significant symptoms that we know limit us. Also, as you say, some are reluctant to talk about the symptoms of Alzheimer's even if they do notice it, either to make you feel better or to avoid the subject altogether. So the usual reality is that early in the disease, at least, we have to decide how to limit ourselves for safety reasons and for other personal reasons. (Although, again, for driving it's a bit different. If I don't notice a problem but another person does, that's a warning signal and I need to check it out. The research indicates that people frequently do not have an adequate assessment of the dangerousness of their driving, see my recent post "Driving.")
Drives me nuts too when people seem to discount what your experience is by making it about their experience. I just thought I knew a lot of narcissists -- until a friend who is a socio-linguist taught me that comments like these are actually a communication style (much more common in women than men, apparently) with the intent of building solidarity with the listener by in essence saying "yes, I know exactly what you mean." When I'm in a good space, I try to think of comments like that as a well-meaning and unskillful way to communicate and nurture a relationship, rather than an active dismissal of what's going on for me. Many blessings to you for being so open and courageous -- hopefully will others will follow suit!
ReplyDeleteThank you very much for this post. I didn't know of the research and had mostly been interpreting these responses to my symptoms as narcissistic (although maybe not quite so harsh). I had something of a tendency to discount the second comment on this post by Anonymous who said he was trying to be in solidarity.
DeleteWell, okay, if that's a particular communication style, then I need to suck it up and find some other emotional response, just as I do when confronting strange customs from another culture and recognize that this way of being is not worse, just different. Under appropriate circumstances, of course, it makes perfect sense to let the person know how their feedback makes ME feel, but not to take the responses of so many so personally.
Lesson learned! Thank you.
I was very happy to find your blog this morning. I was diagnosed last June at the age of 59. I spent the first month in fear and denial reading no less than 15 books about Alzheimer's Disease and contacting the Alzheimer's Assoc. to arm myself for what lay ahead. I struggled with telling my children. A counselor encouraged me to trust them with the news. They are all in their late 20's/30's. It was a positive experience.
ReplyDeleteWhen I tell people this I have to summon my patience. They do not know what to say or do and they do not understand the disease. Most of the time their reactions are about them and I have to let them absorb what I have just told them. When they get really obnoxious about challenging that I have this disease then I ask them, "When was the last time that you forgot how to open your shower stall or could not figure out which bottle was your shampoo?"
You see, they are frightened by what you are telling them. If it could happen to you, then it could happen to them, also.. and it might. So I have found that I just need to let them have their moment.
My 85 year old mother has this disease. She will not face it or do anything to prepare for her future, like move closer to one of her children. She lives in complete denial of it and it is sad to watch. But recently I was asked to become a more public voice for this disease and I was worried about "the whole world knowing" and the stigma attached to it. Then I thought of my mother and decided that I do not want to be like her. So I can summon up the strength I need to be a public figure in this and help others.
I also have found that I need to just live my life and stop worrying about the disease. I need to stay in the moment while I can and not worry about the next moment. But then there are those days that just take you by surprise and bring you to your knees and no one really understands unless they have lived with this disease. I have to look at those days as 'bumps in the road' rather than road blocks. But it is never easy.
I perfectly understand the 'limbo' analogy. I have retired from my career as a teacher and cannot really identify any 'work' that I could do for pay that I would not screw up. Even waitressing... money, remembering orders... or Factory work... anything just seems beyond my abilities now which really crushes me. I did apply for SS disability and cannot receive it for reasons having nothing to do with the diagnosis, but the state government where I live has an unfair law. I am fighting it and that gives me a focus which is good.
If you look at this illness as another path on the journey in life... well, I am meeting lots of new people and learning lots of new things and finding myself in situations I never imagined... So I try to be thankful for that part. And I try not to think about the future too much. And I take the time to enjoy today and I am making visits to people now instead of putting it off until someday...
There is nothing to say about your post other than thank you! You have described some very important facets of this disease and your attempts to work with them as best you can. Like so many others, you've discovered you need to live more and more in the present ... and that that is a certain gift, too. This is another path on the journey, one we would not choose but one that, once given to us, can be lived in fullness. Thanks for writing.
DeleteIt irritates me when people say that their memory is bad, so I simply say I have other cognitive dysfunctions as well and that seems to help distinguish the difference. Sometimes I think that they are just checking a worry about their own ageing memory.
ReplyDeleteI think of what will happen when I need to be cared for in a home somewhere. Living on a boat surrounded by quiet countryside and wildlife, without savings I will end up in a local council 'budget' home possibly in a city which I think will distress me.
I have never earned enough money to save anything, and I don't feel my husband of only 2 years should save the small savings he has for my care later.
My husband finds it difficult to discuss anything regarding the future and I try to talk about my Alzheimer's to him but he can't cope. I think part of me is scared to bring the subject up of what happens later.
I hope that I will not be aware enough to know if the place I am in has poor quality of care.
Gillian Haygreen
Thank you, Gillian for your comment.
DeleteThere are a few bits of information about end-of-life care that might be useful, which you may or may not know.
First, Medicaid (not Medicare) will pay for nursing home care once you have spent down your resources. It might be a good idea to look around now for a nursing home or memory unit that you can go to when the time comes. There are some good one that Medicaid will pay for, so find one now.
Second, whether you want it or not, Medicaid will take most of your husband's resources before it will begin to pay for your care. There are good ways to work with this, but you need to make the arrangements well before (like five years before) you need to go into the nursing home. See an elder lawyer ASAP to talk about the possibilities. It may be difficult for your husband to accompany you to the lawyer's if if he's in denial, but he'd best deal with it ... and quickly.
Gillian may be from England. Her comment regarding "local council 'budget' home" led me to that thought. But your response is very relevant to your US readers!
DeleteMy husband was diagnosed with Dementia NOS and Parkinsonism in 2008 (possibly Lewy Body Dementia). However, even today, he can do fairly well on the MoCA and can carry on a casual conversation for a short time without anyone detecting that he has any kind of impairment. I have read that people who are highly intelligent and well educated like you and my husband (he is a retired architect) can call upon a "cognitive reserve" in a way that others often cannot, making them able to compensate for a longer period of time so that their dementia is less obvious. However, in spite of his relatively good score on the MoCA, my husband can forget entire conversations later the same day and can completely forget some events that occur, sometimes within minutes. However, he does know his the year (although not the date, month or season), his address, phone number, social security # and some other basic information that he learned years ago. He watches the news every day so that he knows who the president is. What he can't do is learn new things very well and he has such serious difficulty with "executive function" that he can't be left alone because he has limited understanding of what is and isn't safe for him to do. Looking back, it is clear that he had MCI for many years before he became dysfunctional enough to be diagnosed with dementia. There is a big difference between being forgetful, having mild word finding problems, forgetting some names, etc. and forgetting whole events as you did when you visited your friend in prison.
ReplyDeleteI commend you for sharing your diagnosis and experiences with others. I also think that people diagnosed with AD (or other forms of dementia like my husband) should be forthcoming about their diagnosis with friends and family or at times when it becomes necessary. On the other hand, I think that the fact that a person has dementia of some kind does not necessarily have to come up in more casual conversations unless the conversation is relevant to that subject or it becomes necessary to explain why a conversation isn't going well. For instance, whenever my husband is asked anything about his finances or for information related to more recent events in his life, I always have to step in and explain that he has dementia so that the person understands that he should be directing those questions to me. My husband tends to simply say "ask my wife" without saying why it is that he is not answering the questions. He doesn't like hearing me tell people that he has dementia but it is often necessary in order to explain that I am the only one who can answer many of those questions and I am the one who will have to be responsible for any follow up that is needed.
I have also heard from researchers that the issue of "cognitive reserve" make diagnosis more difficult in persons with high intelligence. Relative to the level of their disease, they function better on the cognitive impairment tests, can hide their symptoms better in public and so on. But, as you say, other areas will not be improved by the cognitive reserve and the person may have relatively severe impairment. So it makes early diagnosis much more difficult for these folks and tht4e testing needs to be considerably more thorough.
DeleteAnd I also agree that when to reveal one's own diagnosis of dementia is very much an individual matter and also depends very much on circumstances. We don't just randomly tell people we have cancer at any cocktail party (most of us don't, anyway). And I'm sure it's even harder for your husband to have to hear you reveal his diagnosis when it's necessary.
There are so many different new issues that arise in intimate relationships with this disease. We have constantly navigate through difficult waters with each other ... which can bring the relationship much closer ... or not.
Yes, I have the same verbal exchanges with people all the time. I have been told I have mild cognitive decline. Don't trust myself anymore to get a job. Can't remember at times my families names, but I can function. My Mother has Alzheimer's. Sometimes I am just fine, maybe even stronger than most of the people I know. Then, in the middle of a conversation, I start talking about another conversation I had with someone at a different time or circumstance. It's tuff, my family recognizes it. Most of my family. The other family members don't want to see it. They say "We all forget things" Hey!!! If it takes me 15 minutes to remember your name and I have known you intimately for years, it's probably alzheimers. I need a Dr. that will actually give me medication so that I can hold on to what I"ve got! I'm taking care of everybody. Only my husband is taking care of me. No one else gets it!
ReplyDeleteI'm not there yet, but I can imagine that it's especially difficult when you're functioning quite normally for a while and then, bang, you lost track of your thoughts or start off on another tangent. As you say, your family and others with whom you've shared know what's going on. This is one of the reasons that I've shared my diagnosis widely with friends and family: I want to be able to make a stupid comment or repeat myself for the sixth time without having to be embarrassed. If we all know what's going on, it's easier.
DeleteIn regard to getting a medication that will help you hold on to what you've got, you probably know there there is no medication that will let you hold on to what you’ve got. Aricept, which is still, I think, the only one available may help your symptoms somewhat temporarily, but there is nothing that slows the course of the underlying disease. Aricept can apparently recruit other brain cells or improve the function of the diseased ones, but the disease marches relentlessly on. Aricept is probably worth taking to see whether it actually helps (some people it does, and others not) but not to continue it if it doesn’t seem to.
All the things you mentioned bother/ed me as well. Tests: EEG, MRI, HOURS of neuro-psych.Rule out depression, anxiety, Adult ADD, MS, psy. somatic, -- Then MCI. Possible AD, Probable AD. Very Probable AD or FTD. Mixed dementia not AD. LBD w/Parkinsonian, Parkinson's w/LBD. Something definitely not right. Comments: Oh, you're fine - just don't worry" " "It's just getting older" "My (parent, friend, other) had that and you're nothing like them so can't be" . I am 64, educated, female (no it isn't menopause), -- has been 8 yrs. Decline/plateau -- decline. Lot of physical, mental changes. I am so tired.
ReplyDeleteJust reading your list is tiring. But that's what it's like early in this disease. It's tough to pin down.
DeleteDoes it affect your writing or typing? Does it cause dyslexia which perhaps you've never had before. Do you have to edit a lot when typing, much more than in the past. I'm not being impertinent. This is happening to me and I'm wondering if I should get checked out. Or is it just a sign of age. I desperately don't want to have it but I am terribly distraught over this happening to me. I met my wife online and she is a copy editor and she remarked that one of the things she loved was that I was such a good speller.Nine years ago,. I still am but only with a great effort at editing or typing very slow. I didn't have this much trouble in the past. I'm too young. I'm only 56. Maybe it is because when I was a kid the crop dusters would drop DDT on us. I'm desperately trying to figure it out and it is very depressing.
ReplyDeleteI even have gone off my medications to see if it gets better. But that makes it worse or maybe it's the same, but I don't remember it helping.
I typed this very slow and read it back and there were still many errors. I think I caught them all.
For some time my writing and typing has been becoming worse and worse. Whole words will drop out of something I'm writing; occasionally new words will pop in. I'll type homonyms. I have to go back and edit extensively. And my typing itself has gotten much worse. Like you I can (and do) reread everything I type and I think I mostly can catch everything, but it probably takes me twice as long to do much of my writing (although sometimes, like right now, I can type fluently). Go figure!
DeleteI haven't had symptoms of dyslexia.
I don't know of any evidence of DDT causing it.
I would encourage you to get checked out. As far as I'm concerned, the more you know the better you can live. Earlier is better.
Good luck
I was exposed frequently to DDT too as a youngster in Pennsylvania. I often wonder if it has caused damage to my brain. Also spent a summer working in greenhouses, and was frequently exposed to pesticides there.
DeleteIn specific regard to DDT and Alzheimer's, the medical researcher I consult knows of no connection although there may be a connection with dementia from Parkinson's Disease.
DeleteThank you so much for replying. I noticed the other person who had Alzheimers who is blogging is now typing very badly and that's why I thought it must mean something. I've had some memory issues forgetting a lot of little things, but then I forget what they were and can't remember them, but the typing I can see. I hope there is some other reason but the typing thing I can't ignore. It's too easily noticeable because it was a source of pride to me all through law school when I could type up my classmates papers for them when I clerked for a lawyer who was president of the state trial lawyers and then became president of the national Trial Lawyers. I became disillusioned with law when I became a public defender, and I got to know some of the big ego trial lawyers and kind of turned against it. I could see right through John Edwards, although trial lawyers can do many good things, I saw the dark side of law eventually and got out of it. I've always said you are tasked with either making mountains out of molehills or molehills out of mountains, one side or the other, its all basically the same. Maybe the lawyer jokes got to me. But I got out. but I never thought my typing would go. That was always something I had that very few guys had during the period I grew up in, so computers were always enjoyable for me.
ReplyDeleteI do thank you for letting me know that the typing problem is just something I can't ignore anymore. It's gotten pretty bad and I used to be quite accurate. But I'm much too young for this, so I figure something else had something to do with it, the DDT being drop on us as kids because we loved watching the cropdusters or some other environmental cause. But who knows why it happens. My grandmother had it but she was much older. But my sister who is three years older had both hips replaced. Something we eat, or some other factor must be causing our age group to decline earlier than our parents and grandparents. Or it seems that way to me, maybe the statistics say it isn't really any different. I guess that's what they're trying to figure out. Are there research studies you can volunteer for? l don't want to just die without donating myself to some study on why this happens.
Writing issues are what tipped me off, but if it had only been writing I would have let it pass by. I had other things happening that made me connect the writing and realize that something was wrong.
DeleteAs to studies... yes. Put yourself into a study, but first you must have a diagnosis. Find a good neurologist and hope that he/she will listen. Though there is nothing you can do, a study can make you feel some empowerment over the future course of this disease. It won't help us, but may help someone else. Pay it forward.
With your history indicating obvious high intelligence, it may be more difficult for you to get a diagnosis. (Your "cognitive reserve" will allow you to do better on the tests of cognition.) Nevertheless, a neurologist should be able to help you figure out where you are and what your options are.
ReplyDeleteAnd, yes, if you do have early Alzheimer's (or any other dementia), there will be studies that you can get into. Your neurologist will probably know how to find them for you. Otherwise go to the Alzheimer's Association www.alz.org and find one there.
But that's putting the cart before the horse. Go find out what's going on.
Once again, good luck.
David
I forgot to thank you for doing this. You are a source of comfort for many people I ma sure. The fear that comes from this is palpable, and maybe there will be some other reason I am having this but I can't imagine what it would be. But knowing that there are people out there who will be there, or someone hopefully to take their place when it becomes your turn not to do it anymore, I am sure that you are a source of comfort to many people. Just reading about your story makes it sound like it might be easier now. I have been really paranoid about privacy my whole life but if what I am hoping won't be true, but sort of deep down know it is happening, then I won[t even worry about putting the privacy things like ghostery and all the other stuff that blocks the spying on the internet, it won't matter then. Maybe life could be easier for someone like me who has always been a paranoid type. But if you have Alzheimers, who could do anything to you worse than what nature is doing already.
ReplyDeleteI echo David's suggestion to seek a consultation when there is a concern about symptoms. In fact, one person I know who has Alzheimer's, when confronted with a person who says "Well, I forget things a lot, too." replies: "Well, maybe you should see a doctor." But the reality is that early diagnosis can make a big difference. Five years ago I was getting lost, forgetting how to make a cup of tea, and not knowing why I was going up or down the stairs. After starting on the Exelon Patch a lot of my confusion went away. In addition to medication I take supplements, follow a healthy diet, exercise, use my brain a lot, do volunteer work, and belong to a support group. I have developed other deficits, such as the writing and typing problems mentioned above and slower comprehension, but I feel I am less stressed now than I was before I sought treatment.
ReplyDeletePhyllis:
DeleteThanks for your comment. I had not been aware of treatment with an Exelon Patch, but I looked it up. It is different from, but similar to Aricept, the other major drug used in treatment of mild to moderate Alzheimer's. Both operate through similar mechanisms in the brain. Both have been shown to improve cognition in some patients, although they can worsen symptoms in others. Overall their effect is positive enough that they are approved by the Federal Drug Administration.
Both can help symptoms but neither changes the underlying course of the disease, which progresses unchanged. But, your example, Phyllis shows that they're worth a try at some point in the disease.
I know two psych doctors that think the exelon patch is the new treatment. I have had about ten people at a time on exelon. One of the major problems is GI upset and/or diarrhea. They are also quite expensive, especially for a family that is still on private pay. I can't say whether they work or not. Maybe these people would have declined faster, I don't know. Lots of doctors like the aricept-namenda together. I can't say that I've seen any improvement.
DeleteI did have one woman who had a whole lot of anxiety, all day long, on the call light, trying to stand by herself, falling often, alarms going off. She was very nervous. And she was on zoloft as an anti depressant. I talked to her doctor, as I was then on lexapro for a bit of OCD worrying that I tend to do. I asked to switch her to lexapro. He switched her to a very small dose of lexapro. And the difference was amazing. She would sit and chat, smile and wait a bit longer for help. Her son called me up to thank me for giving him back his Mom the way she used to be. It didn't solve all of her difficulties, but she fell less, could wait a bit for help, if we would tell her we will be back for her in ten minutes, she could wait that ten minutes, but not a moment longer. So meds in her case did help. She did have a dementia diagnosis, but I don't know which kind she had.
Maybe some people decline less. My job wasn't to diagnose, my job was to care for them. I didn't notice any big changes in patients on exelon or namenda/aricept.
Now that I think about it I was going to teach for Kaplan because I had scored in the 94th percentile on the LSAT - they require above 90th., but I tried to take the test at home and it was going to be way, way down. I couldn't even get through in time taking it at home. And when I took it the first time at maybe 21 or 22 years old I was the first person to walk out of the room so I just dropped that idea. But now that I think about it, maybe I had already declined then a good bit. That was five years or so ago.
ReplyDeleteBut I did discover I had ADD. Because despite my high LSAT I was in the bottom half of the class because I couldn't stay paying attention to the lectures. My mind wandered. But I read well.
and to the Nike guy I used to be a runner, loved Dr. Sheehan and ran best with Nike waffle shoes. Remember those. I loved them. you can still read Dr. Sheehan online at georgesheehan.com. I should have been a philosophy student. It would have been my line of work for my style of thinking.
Dyslexia and Dysgraphia are two different things. I am not experiencing Dyslexia, but Dysgraphia, or something similar. Fingers type out of turn mimicking someone reading who has Dyslexia. Important difference it seems. Could there be something related to ADD or ADHD, perhaps progressive ADDbut not Alzheimers? Self diagnosis is likely futile, but a desire for understanding what is happening causes desire for knowledge, whic fuels desire for and attempts at self acquisition of knowledge in an attempt to acquire understanding in order to attempt self diagnosis thus defeating logic, in that logic is understanding that one is hopelessly uneducated on this topic and attempts at self diagnosis are in all likelihood bound to fail. Although others have successfully negotiated self diagnosis in that doctors cannot see inside patient's mind.
ReplyDeleteThus creating a paradox.
https://en.wikipedia.org/wiki/Dysgraphia
Deleted previous message and replaced it . The followin was changed. .. a desire for understanding what is happening causes desire for understandingl..
changed two identical assertions:that were nonsensical.desire for understanding causes desire for knowledge.
Your post is, I think, a good example of the confusion we can experience when we try use our judgment or cognition to diagnose a disease that impairs our judgment and cognition. Ultimately you need someone outside yourself to make the judgment.
DeleteIt's possible that the person who says "I know what you mean, I've been very forgetful recently too" could actually have early Alzheimer's, but it hasn't been diagnosed yet. So maybe they really do understand.
DeleteYou're absolutely correct. One person's response to the comments is: "Maybe you should get checked out." It feels like a brush-off, but if intended seriously, it's exactly what should happen. If one is worried about it, get it checked out.
DeleteThere is a beta-amyloid petscan that is used to diagnose alzheimers. I've had one and I was officially clinically diagnosed. In addition clinical trials for new Alzheimers medications often times require a beta-amyloid petscan especially if the study medication is supposed to reduce beta-amyloid plaque. I know this for a fact because I am currently being evaluated for inclusion in a clinical trial.
ReplyDelete