tag:blogger.com,1999:blog-6426202096598051070.post8647796650580107445..comments2024-01-04T09:23:45.843-05:00Comments on Watching the Lights Go Out: Do I Really Have Alzheimer’s?David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-6426202096598051070.post-31429008425780453212015-11-16T18:05:45.736-05:002015-11-16T18:05:45.736-05:00There is a beta-amyloid petscan that is used to di...There 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.Eric Thompsonnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-44695337649798204812013-08-02T21:42:40.988-04:002013-08-02T21:42:40.988-04:00In specific regard to DDT and Alzheimer's, the...In 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.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-43373832097736428922013-07-31T18:01:56.663-04:002013-07-31T18:01:56.663-04:00You're absolutely correct. One person's r...You'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.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-65136586960117601892013-07-31T16:10:35.981-04:002013-07-31T16:10:35.981-04:00I was exposed frequently to DDT too as a youngster...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-55128805538278072852013-07-31T15:39:49.640-04:002013-07-31T15:39:49.640-04:00It's possible that the person who says "I...It'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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-7272413576827093582013-07-02T21:52:13.236-04:002013-07-02T21:52:13.236-04:00You may already know of it, but my friend Carol Ma...You 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.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-73208300219751415572013-07-02T16:06:17.013-04:002013-07-02T16:06:17.013-04:00I have migraine. When people say "oh, I get ...I 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"Pamnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-65035045736955546892013-06-08T11:51:23.628-04:002013-06-08T11:51:23.628-04:00Gillian may be from England. Her comment regardin...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!Kathleenhttps://www.blogger.com/profile/14109245465582979526noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-42456385574235436622013-05-26T20:44:04.516-04:002013-05-26T20:44:04.516-04:00I know two psych doctors that think the exelon pat...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. <br /><br />I 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. <br /><br />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. Anonymoushttps://www.blogger.com/profile/02560132598266108913noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-14363443469767003482013-05-24T17:25:36.172-04:002013-05-24T17:25:36.172-04:00'Nuff said. I hope that your comment and the ...'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.<br />Thanks for writing.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-47495995507081140752013-05-24T15:56:44.174-04:002013-05-24T15:56:44.174-04:00Yes, they do mean well...I'm sure of that. Bu...Yes, 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. <br /><br />This 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." <br /><br />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.Cathynoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-37101740757271435172013-05-24T14:49:51.550-04:002013-05-24T14:49:51.550-04:00Phyllis:
Thanks for your comment. I had not been...Phyllis:<br /><br />Thanks 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.<br />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.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-48755874116402460402013-05-24T14:23:09.780-04:002013-05-24T14:23:09.780-04:00Your post is, I think, a good example of the confu...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.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-38379203245713440422013-05-24T12:19:27.397-04:002013-05-24T12:19:27.397-04:00Writing issues are what tipped me off, but if it h...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. <br />As 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. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-2171807617168301482013-05-24T12:15:16.285-04:002013-05-24T12:15:16.285-04:00Dyslexia and Dysgraphia are two different things. ...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.<br />Thus creating a paradox.<br />https://en.wikipedia.org/wiki/Dysgraphia<br /><br />Deleted previous message and replaced it . The followin was changed. .. a desire for understanding what is happening causes desire for understandingl..<br /><br />changed two identical assertions:that were nonsensical.desire for understanding causes desire for knowledge. <br /><br />Superfluous Manhttps://www.blogger.com/profile/14935534194246434873noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-1940867048822550862013-05-24T03:38:32.207-04:002013-05-24T03:38:32.207-04:00Now that I think about it I was going to teach for...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. <br /><br />But 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.<br /><br /><br />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. Superfluous Manhttps://www.blogger.com/profile/14935534194246434873noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-39608801366154754722013-05-24T02:23:46.213-04:002013-05-24T02:23:46.213-04:00I echo David's suggestion to seek a consultati...I 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.Anonymoushttps://www.blogger.com/profile/07960305992233295304noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-82473025865323888022013-05-23T23:55:16.173-04:002013-05-23T23:55:16.173-04:00I forgot to thank you for doing this. You are a so...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. Superfluous Manhttps://www.blogger.com/profile/14935534194246434873noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-22758303609306117452013-05-23T23:47:53.000-04:002013-05-23T23:47:53.000-04:00With your history indicating obvious high intellig...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.<br />And, 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. <br />But that's putting the cart before the horse. Go find out what's going on.<br />Once again, good luck.<br />DavidDavid Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-11652321374042898992013-05-23T23:32:40.156-04:002013-05-23T23:32:40.156-04:00Thank you so much for replying. I noticed the oth...Thank 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. <br /><br />I 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. Superfluous Manhttps://www.blogger.com/profile/14935534194246434873noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-4025447462560008562013-05-23T23:03:35.470-04:002013-05-23T23:03:35.470-04:00For some time my writing and typing has been becom...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! <br /><br />I haven't had symptoms of dyslexia.<br /><br />I don't know of any evidence of DDT causing it.<br /><br />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. <br /><br />Good luckDavid Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-15276509511563756952013-05-23T17:18:42.988-04:002013-05-23T17:18:42.988-04:00Does it affect your writing or typing? Does it cau...Does 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. <br />I 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. <br /><br />I typed this very slow and read it back and there were still many errors. I think I caught them all. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-21478834241794905122013-05-23T00:04:49.656-04:002013-05-23T00:04:49.656-04:00Thank you for the clarification. I will be a bette...Thank you for the clarification. I will be a better listener.Brian Rogersnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-23302383257880687232013-05-22T21:57:16.345-04:002013-05-22T21:57:16.345-04:00Is there some acceptable response to my complaint ...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. <br /><br />Most 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.<br />I don't know if that's helpful.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-36690828323385773692013-05-22T21:43:33.133-04:002013-05-22T21:43:33.133-04:00Just reading your list is tiring. But that's ...Just reading your list is tiring. But that's what it's like early in this disease. It's tough to pin down.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.com