tag:blogger.com,1999:blog-6426202096598051070.post7809366433410778360..comments2024-01-04T09:23:45.843-05:00Comments on Watching the Lights Go Out: Letting Go of Alzheimer’s (1)David Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-6426202096598051070.post-1455549299893182522015-05-17T01:42:36.461-04:002015-05-17T01:42:36.461-04:00Look into autoimmune encephalitis and Lyme. There ...Look into autoimmune encephalitis and Lyme. There is something called hashimotos encephalopathy. A blood test for tpo and tgab can be done to test for hashimotos. It typically attacks the thyroid gland, but it's also a marker for possible attack on the brain. A thyroid panel can be normal, so get the antibodies checked. The Lyme test should be via Igenex. Or go see a llmd.Anonymoushttps://www.blogger.com/profile/11881428923820665997noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-5617457169346891752014-01-28T17:51:37.935-05:002014-01-28T17:51:37.935-05:00Yes, most groups are for caregivers, but there are...Yes, most groups are for caregivers, but there are now more and more groups for affected people, too. The Alzheimer's Association www.alz.org has lists of such group sorted geographically. If there isn't any in your area, they might be willing to help you begin one yourself.<br />I've been to one such group, and it seemed very helpful, as you might guess.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-12516836432458003292014-01-28T12:06:21.476-05:002014-01-28T12:06:21.476-05:00My father has been diagnosed with MCI and Lewy Bod...My father has been diagnosed with MCI and Lewy Body Dementia is suspected, but like alzheimers unconformable without autopsy. He is still functional enough to see his own decline though unable to continue his therapy practice and is struggling with the loneliness of it in a way we cannot seem to help him with. His multiple previous diagnosis (manic. psychosis, etc) combine with his history advocating for clients have fed a serious mistrust of most medical practitioners. It seems most support groups are for care givers but would love to find a way for him to connect to others on this confusing and terrifying journey as we love him through it. Thank you for this space.Carnal Zenhttps://www.blogger.com/profile/09696503829191938732noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-28179484224030369852014-01-17T21:56:14.151-05:002014-01-17T21:56:14.151-05:00You're correct that Alzheimer's can only b...You're correct that Alzheimer's can only be definitively diagnosed upon autopsy. when you can actually see the amyloid plaque that gums up the nerve synapses or the "neurofibrillary tangles" that damage the interior of the brain cells. For clinical purposes (ie what the doctor tells you), a diagnosis of Alzheimer's is made when a) the cognitive impairment reaches the level of dementia, b) other forms of cognitive impairment have been rules out, c) the impairment comprises an impairment of memory and one other kind of cognitive impairment and d) the disease is progress, ie it keeps getting worse. Obviously, that doesn't work all the time, and it's especially difficult to use early in the course of disease.<br />There is, however, a new set of brain scans being developed that will actually allow you to see the amyloid and perhaps have evidence of the neurofibrillary tangles. These are new and they're still working to refine them so that they're good enough to use regularly. If these tests turn out to work as well as they think, then the definition of Alzehimer's will change and, since the amyloid begins getting deposited long before symptoms develop, it will be possible to make a diagnosis early.<br />There are some people who just don't recognize that they don't have dementia symptoms. it's a condition called anosognosia (which I wrote about in a post called "It's not denial" on Aug 21). For those people, the brain has been affected so that they literally cannot recognize their deficit. I don't know exactly how common that is, but it's nowhere near 50%. There are other people who are in psychological denial because of the emotional impact of facing the diagnosis. But most of us are quite aware of our symptoms.<br />And I agree whole-heartedly with your last paragraph. Thanks for writing.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-80210350347774560722014-01-17T18:15:47.100-05:002014-01-17T18:15:47.100-05:00I understood Alzheimers disease could be diagnosed...I understood Alzheimers disease could be diagnosed only at autopsy.<br />I also understood if you have Alzheimers, you would have no knowledge of it.<br />Hold on to mild dementia diagnosis, as your body and mind age naturally.<br />Celebrate what you have. Accentuate the positives. Let the negatives slide. Lean on your loved ones. You dont have to be the leader. Gather them around you and let them know all at the same time. Write notes and consult with your wife before the gathering.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-58987838077914793012014-01-10T21:05:42.919-05:002014-01-10T21:05:42.919-05:00As difficult and terrible as this disease is, it c...As difficult and terrible as this disease is, it can teach us some very important things about ourselves that actually make us happier. And coming to terms with the fact that there are just some things that you CANNOT do is important for the acceptance that can bring a measure of peace.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-6631367146141669522014-01-10T21:02:28.451-05:002014-01-10T21:02:28.451-05:00Hello, I also was given the same diagnosis after e...Hello, I also was given the same diagnosis after extensive testing, mild cognitive impairment/ probable Alzheimers. Your symptoms, sound like a mirror image of my own.Four of my Dad's syblings had the disease. I am getting better although I still have problems with word finding and executive function. I have needed to cut back my work schedule, refuse to go on disability, but instead choose to believe that God did not give this to me, doesn't want me to have it, and wants me better. I had allowed myself to carry too much stress for too long. I thought I could not make some necessary changes to allieviate the stress so I postponed making them and I believe this is the result. I have HAD to make changes, my life now is much more manageable, I know what you stated in aanother post about being happier, My husband and I own a business & it was killing us both. I feel like I now have a life again. I am not the person I used to be, I cannot manage what I used to manage, and it took this crisis to turn me around. I know hat you also mean about the lights going out it was a dark scary place that I never want to go back to. I also have discovered who my real friends are and who genuinely loves me. It has helped sort out surface relationships and helped me to re-focus on a real relationship with Jesus Christ.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-4176794421745595362013-12-06T17:36:12.434-05:002013-12-06T17:36:12.434-05:00I have had life-long depression and anti-depressan...I have had life-long depression and anti-depressant medication now for almost twenty years. the difference between us may be that the medications have been very effective with me, and I don't think I experience it anymore than anyone. The medications I'm taking do not list delirium or dementia as side-effects (although certainly anything is possible). Given the very small chance that the medications are part of my impairment, I've not been willing to risks the months of darkness that would most surely come if I stopped the medication.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-49980324298203093192013-12-05T23:50:29.482-05:002013-12-05T23:50:29.482-05:00david, i think life long depression and antidepres...david, i think life long depression and antidepressants usage effects us in old age...i have been depressed from 16 to now (70) with brief periods of happiness, life long meds, steller nursing career, intense fear at not being able to practice nursing and then a new antidepressent or dosage increase and i get better...does this happen to you?<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-78278652273795257682013-11-28T15:43:14.659-05:002013-11-28T15:43:14.659-05:00Dr Hilfiker,
I have read all of your posts with in...Dr Hilfiker,<br />I have read all of your posts with interest since I discovered it a few months ago and what really amazed me was your acceptance of changes within yourself. And also a positive slant....like the blog where you welcomed having the space to read novels instead of being frustrated that you could no longer concentrate on heavier academic tomes. Nobody close to me has had Alzheimers but my daughter has had Chronic Fatigue Syndrome/ME since she was a teenager (7 years now) and your views and thoughts certainly helped me be a more caring parent in the situation ( I think and hope). And I can certainly empathise with the uncertainty and lack of definite diagnosis. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-42819891849779928742013-11-05T17:29:01.609-05:002013-11-05T17:29:01.609-05:00Marja has always dealt with uncertainty much bette...Marja has always dealt with uncertainty much better than I. I'll see if I can get her to write something.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-31387470352614305022013-11-04T08:05:12.908-05:002013-11-04T08:05:12.908-05:00How is Marja dealing with this? And have you been ...How is Marja dealing with this? And have you been tested for celiac? There's a "brain fog" that goes along with that. Sharon Fargohttps://www.blogger.com/profile/14392865150301875589noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-90836511622421618182013-11-03T21:02:40.971-05:002013-11-03T21:02:40.971-05:00I certainly have thought about it a lot. It's ...I certainly have thought about it a lot. It's one of those unknowables. Now that I know the results of the objective tests, I may interpret my symptoms somewhat differently. This would be perhaps the best news of all. Our mind does strange things with us.<br />ReplyDeleteDavid Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-57098186400487051282013-11-03T02:01:05.753-05:002013-11-03T02:01:05.753-05:00Have you considered the possibility that your init...Have you considered the possibility that your initial memory issues were caused by something transient which was misdiagnosed as Alzheimer's, but then that the psychological implications of the diagnosis itself caused you to develop other impairments which seemed real to you and indistinguishable from "real" Alzheimer's to other people?Hmmmmmhttps://www.blogger.com/profile/11913461587472429089noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-35234655261255921772013-11-02T23:11:18.266-04:002013-11-02T23:11:18.266-04:00I am quite grateful to all of you who share this j...I am quite grateful to all of you who share this journey with me.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-57225274891740818022013-11-02T18:58:28.900-04:002013-11-02T18:58:28.900-04:00Dear Dr Hilfker,
I discovered your blog a few mo...Dear Dr Hilfker, <br /><br />I discovered your blog a few months ago and shared it with my bothers and sisters. Our mom has Alzheimers and so your blog has become very meaningful for us. I'm so sorry to hear about the inconclusive results. It would have been so much better to discover that you have a disease that medical science has a cure for. "Here; take this medicine. You'll be better in a week." It is so difficult to stand by and know that the lights are dimmer while all of those wonderful tests do not detect the change.<br /><br />Thank you so much for letting us share your journey. Your blog helps me to travel my own personal journeys with greater understanding and with a greater sense of traveling through life as part of a larger community. Thanks for letting us travel with you.<br /><br />Anonymoushttps://www.blogger.com/profile/18039089272019904256noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-29302548023278331392013-11-02T14:35:36.450-04:002013-11-02T14:35:36.450-04:00I'm sorry - I provided the wrong link - this i...I'm sorry - I provided the wrong link - this is the one I meant to give: http://www.ncbi.nlm.nih.gov/pubmed/22301077<br /><br />But maybe your cnclusion will be the same...Maryhttps://www.blogger.com/profile/00578600599264586036noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-66517451614513502862013-11-02T12:01:23.079-04:002013-11-02T12:01:23.079-04:00As far as I can tell from the abstract of the arti...As far as I can tell from the abstract of the article, they are pointing to the SYMPTOMS of depression that are correlated with cognitive impairment and not the medications. I have checked in several places on the Internet and with my several neurologists and there is no evidence that the medications that I am taking for depression are linked to cognitive impairment. And I haven't had significant symptoms of depression for over 15 years.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-57279905855780297222013-11-02T11:53:55.416-04:002013-11-02T11:53:55.416-04:00In my own case, I never had the signs of acute enc...In my own case, I never had the signs of acute encephalopathy, so that is unlikely to be a cause of prolonged cognitive impairment. Ultimately, of course, anything is possible if you're willing to accept minuscule odds. And one of those "anythings" may turn out to be the cause. At this point, the task is to accept where I am and remain interested in what's coming.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-38991522888316430992013-11-02T11:24:07.310-04:002013-11-02T11:24:07.310-04:00Congratulations on your undiagnosis! I was intere...Congratulations on your undiagnosis! I was interested in how your neuropsych tests were going to come out. <br /><br />When my husband was going to take the tests I cautioned my son, “Sometimes people who are very smart, like your father, can pass those tests with no mistakes, even when their wife and children may notice that there is definitely something wrong. So don't get your hopes up that these tests are going to give us any answers. They may not.” My son responded, “Dad's not going to pass the tests.” My son was right in our case, but the fact remains that intelligent individuals can pass those tests even though they are in the earliest stages of dementia. Early on my husband definitely had good days/bad days…good stretches/bad stretches. Maybe if he had taken the test on a good day during a good stretch he would have passed. Who knows? I am glad the tests did provide his MCI diagnosis, because it was frustrating and frightening for our family, since he had no recognitionn of his own impairments (anosognosia). It reassured us that none of us was crazy and this was real, as the report stated “there is clear evidence of organic cognitive dysfunction.”<br /><br />However, we still do not know whether his is early Alzheimer’s disease because my husband does not want to know and refuses the Amyvid Pet scan. So we know he has MCI but we don’t know what the future holds. <br /><br />I would say you are very close to the same position, you may not carry the MCI label anymore, but you do have cognitive impairments and you don’t know what the future holds.<br /><br />So I guess we are all left with the apt cliché, “Live for today.”<br /><br />FYI, prolonged use of anti-depressants can cause cognitive impairments - a study of elderly women showed 70% increase in the risk of mild cognitive impairment and an increase in the risk of probable dementia: http://www.ncbi.nlm.nih.gov/pubmed/21226676<br /><br />And in support of earlier posts here is another link to info on the dangers of statins, including cognitive impairments: http://www.westonaprice.org/cardiovascular-disease/dangers-of-statin-drugsMaryhttps://www.blogger.com/profile/00578600599264586036noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-72425683501164895212013-11-02T01:45:55.312-04:002013-11-02T01:45:55.312-04:00An earlier commenter mentioned statins but as one ...An earlier commenter mentioned statins but as one who had a very bad reaction to them, I'd like to underline that possibility. The problem with statins is they stop your body from producing CoQ10, something that can also be due to aging and cause similar symptoms.Mehttps://www.blogger.com/profile/05080767128939690601noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-7032132805910539002013-11-02T00:14:10.254-04:002013-11-02T00:14:10.254-04:00This may be the first non-spam comment that I'...This may be the first non-spam comment that I've deleted from the site, but I am trying to keep the site free of advertisements for commercial products. David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-45599947418975261312013-11-01T23:45:19.480-04:002013-11-01T23:45:19.480-04:00There will be quite a bit to change about the blog...There will be quite a bit to change about the blog and my website. The title still holds at this point, at least as far as my subjective experience is concerned. Certainly the subtitle needs changing. But I'll have to explore slowly how to modify the wording. At this point the only thing that has really changed is the uncertainty.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-5030871848930581182013-11-01T23:43:04.687-04:002013-11-01T23:43:04.687-04:00"Whatever we are expecting to happen will not..."Whatever we are expecting to happen will not happen."<br />Amen!David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-76059213810845432722013-11-01T23:41:59.500-04:002013-11-01T23:41:59.500-04:00Several of my close friends have spoken about &quo...Several of my close friends have spoken about "trusting your perceptions," which is another way of saying what you've just written. I know my symptoms, I know my limitations. Whether they show up on an objective test does not change anything about my current condition. Diagnoses can be important for making treatment decisions and estimating prognosis, but they don't help much in the here-and-now. In this particular case, there would be no treatment anyway and the prognosis would be uncertain, anyway. So, like everyone else in the world, I have to live with great uncertainty.<br />Recognizing the fragility and uncertainty of life is probably a good thing.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.com