I just finished the book Still Alice. My question is about genetic testing. In the book they used the discovery of the Alzheimer's gene to confirm diagnosis. Why isn't that used more in diagnosing? Also, is it true that if the patient had the EOAD gene then his/her offspring have a 50/50 chance of also getting the disease? The book is fiction but I would think the author would have the facts straight. I have just had my DH tested but we don't have the results yet. I sure hope it's not the genetic form of AD! Dealing with this disease has been so hard, as you all know. I have not even let my mind go to the possibility of my children getting it too.
I'm not sure where it is, but you can do a topic search at the top of the page for EOAD - quite a few topics will come up, and also drug trials/vaccines. Somewhere in there is an explanation by Trish about the different types of genes. Or you could do a "comment" search for "genes". Sorry I can't be of more help - I haven't even started packing for DC yet (and I'm leaving tomorrow morning), so I'm going to do that now. I don't know if Trish will be along to answer you, because she and Bob are also going to DC. Not sure when they are going.
The author will be speaking at the DC Forum on Monday. I copied this directly from the program. I believe this is where Trish's husband Bob, will be speaking.
Early-Stage Summit This event is designed specifically as a forum for people with early-stage dementia to come together and share insights, especially about the diagnosis experience. The keynote address will be delivered by Lisa Genova, Ph.D., author of the award-winning book, Still Alice.
I actually thought this was one of the most thoughtful, sensitive reads I've ever seen on the subject. Unfortunately my husband was in total denial from the beginning; he was unwilling to talk either to me or our children about how he felt - so sad. But this story tracks beautifully with a few people in my support group that had that opportunity - it has helped them immensely with understanding what their spouses were experiencing. It also sheds light on how and why so many of our very intelligent spouses were able to cover this up for so long. I highly recommend it - could hardly put it down.
I read Still Alice several months ago. The next week I read Dancing With Rose. They were both helpful but from my perspective, I would recommend Dancing With Rose--it gives a clear look at long term care. Still Alice is a novel while Dancing With Rose is the author's personal experience working in a long term facility--a look at patient care, care employees--but still a "can't put it down" book.
Having never heard of "Still Alice" I googled and found the author's blog. I recommend it. Some interesting entries re AD. Here is a link you should be able to "copy & paste".
Welcome to my website. You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There is also a new section of Educational Videos about Alzheimer's Disease. They are excellent. There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information.
Welcome - I hope you will visit often and get the support and information you are looking for.
Currently, the message boards and all of the resources can be accessed for free, but due to the high cost of maintaining the website, anyone who is able to make a payment in any amount to help defray the costs may do so by clicking on the "sticky topic" - Payments to this website. Any purchases made through the Amazon links and Zazzle Marketplace also help keep this site up and running. Thank you.
There is an Amazon link to "Still Alice" on the right side of the home page - www.thealzheimerspouse.com
Lisa Genova, the author, was a speaker at the DC Public Policy Forum. I bought the book at that time, but have not had the time to read it. I am reading a caregiving book by an author I met at last weekend's Advocacy training. When I finish that one, I will start on Still Alice.
I have been a big supporter of Richard Taylor since I read his book.Sid and I heard him speak at a conference here in Florida about 2 years ago. Sid said that Richard said everything that Sid was thinking about having the disease, but wasn't articulate enough to express. He was extremely impressed with him.
I get his monthly newsletter, and it has been a window into understanding Alzheimer's Disease to read how his writings have progressed. It is very sad. He was very clear, humorous, and lucid in his book. Now he tends to ramble, does not understand why others can't accept all the changes in him, and interestingly, is unable to see why some of his bizarre behaviors bother people. Most telling, I think, is the fact that he freely admits that he kind of "blanks out" and doesn't even realize he is doing something inappropriate. Fascinating book - here is the link for anyone who is interested in the book: http://astore.amazon.com/wwwthealzheim-20/detail/1932529233
I asked one of our doctors about Richard Taylor and it was their " professional opinion" that he really didn't have Alzheimer's per se, but rather a different strain of dementia based on the time line since he first came out with his challenges. Who knows. It".
Steve and I met Richard Taylor a few months ago...what I really like about him is how he doesn't go with the flow...in his book and in speaking to him, he has such a unique perspective. We are on a patient and family advisory council at the Memory Clinic where Steve is seen, and Richard and his wife attended the kickoff meeting. He gave some really great suggestions on how early stage patients and spouses could serve as mentors to others who are newly diagnosed. He must have been truly brilliant before dx if this is how he is after dx. I also recommend his monthly newsletter. You may not agree with everything he says, but it is remarkable that his congnition is still relatively intact after this much time.
It sounds like to me he has been progressing very slowly. Whether it is meds he is taking, exercise and nutrition or whatever - he is just able to keep on. We all know that AD affects each one differently and how they are depends on the areas that are affected. And, what if it is a different dementia? How many here have spouses where the diagnosis was changed later to some different dementia?
Mine was changed. At first we were told it was definitely Alz, but now have changed it to LBD based on his hallucinations and unsteadiness. He has kind of a right-foot drop when he walks. I have him on the list for a brain autopsy for the Univ of Wash Alz Research center, so I guess we'll know then which it really is. I'm very content to wait a long time to find out :-)
Richard Taylor had a 160 IQ to begin with, and it has declined considerably since diagnosis. HOWEVER, it has a long way to go to decline to "normal", so that is why he has functioned so well for such a long time.
Just in case anyone asks - from a testing standpoint, depending upon which test is used, a "normal" IQ has a range betweein 85 and 115. 100 is considered average. 85 is fairly low functioning. Over 140 is considered genius, so you can see where that puts Richard.
Claude was diagnosed with Alzheimer's and when he was in stage 5/6, the neuro added Parkinson's to it.
I did alot of research on LBD and felt Claude had nearly all the symptoms. I was going to talk to his neuro about it, but he started falling, and I fell and broke my pelvis and was wheelchair/walker bound for six months. The neuro cancelled an appt. and then I had to cancel the other, so never got to talk to him before Hospice started.
Just read "STILL ALICE" this week...highly recommend ~ Sooo good & cannot stop thinking about how my DH must feel & really find myself trying to put myself in his shoes/head after reading this book. It seems to help in dealing with him these last few days. Bottom line, this disease sucks! No doubt about it. I already knew that, but reading it from someone's perspective who HAS the disease really paints a different picture about it. It is a "fiction" book, however, the author is a neuroscientist and did alot of research on the disease and includes alot of info in the book...plus, according to the book jacket & end pages, she also met with & discussed this with alot of EOAD patients. The woman in the book is 50 when diagnosed. The genetic information is also interesting to read, esp since we have children too. I have gotten copies for each of our kids & am going to write them a letter either tonite or in the morning to encourage them to read it...the person is STILL __________________....fill in your loved one's name..."I" already knew that & feel, as many of you do, that sometimes, they just seem to "get it" when we talk to them...the book totally confirms that and I want to try to get that across to our kids, because I think they are staying away because they just don't think he is in there any more...very very sad. We'll see what they think, if they choose to read it. Rambling now...
I wanted to wait until I read the entire book before I commented. When I finally picked it up to read it, I could not put it down. As I mentioned above, I met Lisa Genova, the author of Still Alice, at the Washington DC forum in March. No offense to her, but her talk was less than inspiring. She read passages from her book, and just was not a particularly dynamic speaker. HOWEVER, she is one Hell of an author.
She wrote this book about a brilliant psychologist at Harvard University who develops Early Onset Alzheimer's Disease. The book is fiction, but the most realistic perspective on what it feels like to have AD that I have ever read. I highly recommend it to everyone.
I won a copy of Still Alice at a caregiver's conference in August, and think it's an excellent book. Recommend it to family members who don't yet understand, too.
Could this book have been made into a tv movie starring Joanne Woodward? The premise was the same. It was years ago but I was very moved by it then and still remember some of the scenes. cs
I read Still Alice a few months ago and could not put it down. The images still haunt me. My understanding of the genetic testing is that yes, this can be done to predict the probability of passing the disease on to children but that IT ONLY IS TRUE IF THE PATIENT IS EARLY ONSET AD. My DH had genetic testing done as part of his participation in the GSK drug trial. However, I don't believe we will be told any results of the gene testing. He does not have early onset (diagnosed at age 76). GSK is just gathering as much data as possible and even keeping his blood samples for up to 15 years (so they say).
I looked on line and the name of the movie was Do You Remember Love. It was on TV in 1985. I was 32 when I saw it and AD never crossed my mind but it made an impression on me. I remember thinking what a horrible disease that must be. Who would have thought... cs