tag:blogger.com,1999:blog-6426202096598051070.post3265378753710605683..comments2024-01-04T09:23:45.843-05:00Comments on Watching the Lights Go Out: GrandchildrenDavid Hilfiker http://www.blogger.com/profile/00479949692410414480noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-6426202096598051070.post-86226689850290565212013-04-05T23:13:24.363-04:002013-04-05T23:13:24.363-04:00Amy:
Thanks for writing, and I’m happy you’re in...Amy:<br /> <br />Thanks for writing, and I’m happy you’re interested in following the blog. I’m interested in your questions:<br /> <br />1. "It is embarrassing and I usually just retreat -from asking a 2nd /3rd time. It is isolating & depressing."<br />When I first found about my diagnosis last September, the thing I feared the most was the isolation, and I realized that one of the primary reasons for the isolation is the embarrassment (sometimes even shame) that is evoked. So nobody talks about it. So when you start to have the memory problems or find yourself unable to do the tasks that other people have depended upon you for, the only possibility seems to withdraw. Because being publicly open about things that people don’t ordinarily discuss is a strong part of my history, I made the decision right away to announce my diagnosis to everyone I knew (and quite a few people I didn’t know). And then I began referring to the symptoms—so far mostly memory loss—as they occurred, reminding people I had the disease. The response from my family and my (faith) community has been wonderful. I feel much less isolated than I did before my diagnosis. Things aren’t that bad for me, yet, so things may change, but being quite public and continuing to talk about it frequently has been very important for me.<br /><br />2. "Also, women /medical staff blame menopause for a lot-I wonder if we tend to overlook early Alzheimer's by doing so? And conversely, if we over-sensitize to the possibility of Alzheimer's (perhaps, in my case)?"<br />I suspect you're exactly right about the two sides of the coin. On the one hand, most everyone (doctors included) want to avoid the diagnosis of Alzheimer's, so we try to find any other cause that will keep the true diagnosis at bay. On the other hand, it's very easy to take the symptoms of many other disease and too easily diagnose Alzheimer's. Since more definitive tests are expensive, we can go a long time without knowing for sure. <br />3. "Finally, Was it expensive to get definitive testing? You seem very confident of your Dx."<br />I haven’t yet had “definitive testing” (although I will get the two newest tests as part of a study I’ll soon be entering). My understanding of Alzheimer disease is that the only way to diagnose it definitively is by autopsy at death. The way it’s diagnosed in practice is that when “progressive cognitive impairment” is demonstrated (by straightforward cognitive testing) and the other causes of dementia have been ruled out, what’s left is Alzheimer’s. This is my current position; all the other diagnoses have been ruled out. I asked the neurologist point blank whether I had Alzheimer’s, and he was willing to have a direct conversation. He believes that I have Alzheimer’s; at another time he said that his “gut feeling” was that it was Alzheimer’s. As a physician myself, I know doctor-speak well enough to know that he’s as certain as one can be in medicine that it’s Alzheimer’s. There are two new tests, but they, too, have their uncertainties; both are only about 95% accurate. They are Positive Emission Tomography (PET), which is very expensive (I don’t know how expensive), and I chose not to have it. The other is a test of the spinal fluid (obtained by a spinal tap) that my doctor recommended against because there is a small risk of significant complications (like meningitis) and a positive test doesn’t change what we end up doing. The spinal fluid has about the same accuracy as the PET. Is it possible that I don’t have Alzheimer’s? Yes. But it’s highly unlikely. Given the many problems that skepticism about the diagnosis can bring, (the main one being you’re afraid to talk about I at all and feel even further isolated), I’m happy to believe I have it until proven otherwise. Given the fact that I'm now so public with the diagnosis, if I’m wrong, I'll be embarrassed. A few minutes after that, we can have a celebration.<br />4. "I will read more of your blog" <br />And I look forward to hearing more from you.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-66142921801088761382013-04-01T20:44:57.807-04:002013-04-01T20:44:57.807-04:00I was just reading Dostoevsky and he referred to d...I was just reading Dostoevsky and he referred to dementia as the "second childhood," which was apparently a common term in certain cultures. Interesting.David Hilfiker https://www.blogger.com/profile/00479949692410414480noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-51278677502875878682013-03-31T23:42:04.712-04:002013-03-31T23:42:04.712-04:00Thank you for writing this blog, Doc. I find great...Thank you for writing this blog, Doc. I find great refuge in it-as my father suffered (and I am already impaired --in my early 50s). <br />1.It is embarrassing and I usually just retreat -from asking a 2nd /3rd time. It is isolating & depressing.<br />2. Also, women /medical staff blame menopause for a lot-I wonder if we tend to overlook early Alzheimer's by doing so? And conversely, if we over-sensitize to the possibility of Alzheimer's (perhaps, in my case)?<br />3. Finally, Was it expensive to get definitive testing? You seem very confident of your Dx.<br />4. I will read more of your blog- just started and am on an iPhone (limited reading).-AmyWeb Adminhttps://www.blogger.com/profile/13105476201299119907noreply@blogger.comtag:blogger.com,1999:blog-6426202096598051070.post-60199339456893931472013-03-31T16:05:58.828-04:002013-03-31T16:05:58.828-04:00This is a beautiful post, David. In a previous art...This is a beautiful post, David. In a previous article I just read about your blog, you mentioned 'in the present, it's ok', but in the future, not so... that's what kids always remind us.. that gift of just staying in the present- we lose that as adults. I hope this blog reaches far- you are still teaching :)Ashenoreply@blogger.com