tag:blogger.com,1999:blog-7653992523037998002024-03-05T14:16:12.272-06:00Awareness for Early Onset Alzheimer'sEarly onset Alzheimer's awareness, experience, and support.
Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.comBlogger19125tag:blogger.com,1999:blog-765399252303799800.post-86980507087819937522013-07-05T20:46:00.003-05:002013-07-05T20:48:12.859-05:00First DIAN visitWe survived out first DIAN study.
I was so nervous about going and doing the tests. Not really knowing what to expect, going somewhere new, and doing something out of the ordinary really got my nerves in a bind. But it went smoothly and we are all recuperated now.
It was an intense few days with Psychometric tests, MRI, Lumbar puncture, PET scans, and finally a clinical assessment.&Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com2tag:blogger.com,1999:blog-765399252303799800.post-75796306202589768602013-06-19T23:17:00.000-05:002013-06-19T23:24:46.143-05:00DIAN here we come!!
I know. I know. I keep
saying I’m going to find the time to post.
I am a very busy girl. ;)
Here is a quick update…
So my sister and I didn't go to Pittsburgh like we had
planned. Many circumstances came up and
it was just not going to work. Instead,
we will be going to St. Louis and take part in the DIAN study there. We are leaving this Sunday and Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com1tag:blogger.com,1999:blog-765399252303799800.post-45027626678352451522013-02-25T21:08:00.000-06:002013-02-25T21:08:06.206-06:00Change of PlansIn my last post I said the dates were set for my sister and I to go to Pittsburgh to participate in the DIAN study. We won't be going to Pittsburgh in April. Things just don't go as easily around here as I would like. LOL
So, as of right now, we are planning on participating in the study at the University of Washington, in St. Louis MO instead of Pittsburgh. It is the exact Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-37505625874479338212013-01-27T22:18:00.000-06:002013-01-27T22:18:26.964-06:00Set dateThe dates are set! My sister and I along with my mom and husband will be in Pittsburgh the first of April.
We will be doing the DIAN study. I have posted about DIAN in an earlier post last year sometime. We are a little nervous about the whole thing, but also happy we get to do our part in the research for EOAD.
I can't wait to post about that when we get back.
While we are Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com1tag:blogger.com,1999:blog-765399252303799800.post-3914892637564421862013-01-12T19:37:00.001-06:002013-01-12T19:37:17.046-06:00Time to Get Back Into the Swing of It!!!I can't believe it has been over a year since I have posted. There were multiple reasons I was unable to post, but once they got fixed there were the excuses. I have followed some of my fellow bloggers in their awareness for Alzheimer's, but have been very busy with life itself and haven't been able to keep up as much as I would like.
Over the past year two of my cousins and my auntSherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com2tag:blogger.com,1999:blog-765399252303799800.post-53604422096323657872011-12-12T14:40:00.000-06:002011-12-12T14:40:42.462-06:00HolidaysHolidays are always hard when you have lost a loved one. I remember the first Thanksgiving and Christmas we had without my dad. He was in the nursing home and we celebrated at my house with my sister and her family. I think we had it there that year because of how weird it would have been to have it at my parent's house without my dad. We went and visited him in the nursing homeSherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com5tag:blogger.com,1999:blog-765399252303799800.post-68205099526591391682011-11-23T19:20:00.000-06:002011-11-23T19:20:39.874-06:00A New WayI wrote my story and how I dealt with my dad having Early Onset Alzheimer's, I have posted different links, and what I have thought was good information. I have gotten involved with groups and have been trying to get a website built. I've been asked what is next, and to keep posting. I just have been blank about what to write. I've also been doing a lot of reading and Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com6tag:blogger.com,1999:blog-765399252303799800.post-87469809706113645482011-10-23T21:52:00.000-05:002011-11-04T21:54:19.107-05:00Just poppin in.Wow, I haven't posted anything in almost a month! I have been so busy lately. Of course, my kids keep me going every direction all day everyday, but I do try to find the time to work on creating my website and getting more info gathered up to get it going. A couple of weeks ago our computer crashed (again) and I lost all my bookmarks. Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com1tag:blogger.com,1999:blog-765399252303799800.post-53435040910030894582011-09-26T12:14:00.000-05:002011-09-26T12:14:20.047-05:00Friends that won't stayThis next piece really hit home for me. My parents had a lot of friends and there were more that stayed around after my dad's diagnosis came out in the open, then didn't stay, but there were those ones that just never came back around. Some would still come by to ask my dad to help them with their car or borrow a tool, but when they started seeing changes in him they ran for the hillsSherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-46585746018493535542011-09-26T11:02:00.000-05:002011-09-26T11:02:36.898-05:00Granddads wordsMy children were to young to remember my dad, but my nieces were older and have memories of him. Their J-Pa. This piece of a story reminded me of him with them and I know he would have said in his own words the same thing. His speech was one of the very first things to go, way before he even got farther along in the stages. So he couldn't tell us what he was feeling, so I think Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-61429564097033626552011-09-25T19:48:00.000-05:002011-09-25T19:48:07.617-05:00A forgotten thoughtI wanted to share this.
Today I was outside, enjoying the cool breeze that Oklahoma seldom has. I love this time of year so much. I thought of something, and came in to do it, but I was approach by one of my daughter's telling me something that she was doing with her friends outside as our dog is having some kind of anxiety attack, I call it, because she wants to be outside withSherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com2tag:blogger.com,1999:blog-765399252303799800.post-67272181144433205912011-09-20T22:26:00.000-05:002011-09-20T22:26:16.136-05:00Go Purple on September 21st!September is World Alzheimer's Month (WAM). Join us in the fight against Alzheimer's by honoring the heroes that fight against the disease every day — and become a hero by helping to raise awareness. September 21st is Alzheimer's Action Day. Wear purple to raise awareness. My children are wearing their purple shirts to school that they wore to the Walk to End Alzheimer's. Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-28569634608799806152011-09-13T16:21:00.000-05:002011-09-13T16:21:59.704-05:00Dementia Awareness Day. September 17thThis is Norm's videos and links to his books. I am planning on putting some of his amazing work on here. Please come back for more.
http://youtu.be/UoIcrbApVjA
Here is his wife's story. You go girl!!
http://youtu.be/0FDOlrCEezo
Here are his books. I have read the first one "Me and my Alzheimer's". I would recommend these to anyone, even those that are not Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com3tag:blogger.com,1999:blog-765399252303799800.post-74411549881071804542011-09-10T18:37:00.000-05:002011-09-10T18:37:22.249-05:00Needing a push in the right direction. Any type of Alzheimer's is gut wrenching and means the person diagnosed is going to die. No matter if you are 70 or 40 when diagnosed. The gene my family carries does effect individuals at a lot earlier age and has a specific name, but it doesn't mean I feel like ours is any worse than those that are diagnosed at a later age. I sometimes think people Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com1tag:blogger.com,1999:blog-765399252303799800.post-73709696162620625172011-09-04T19:39:00.000-05:002011-09-04T20:58:08.591-05:00Some Scientific BackgroundThese are some facts I found on Familial Early On-set Alzheimer's. The presenilin 2 gene is what the DeMoe's carry.
Alzheimer's is the opposite of cancer.
Cancer is runaway cell growth.
Alzheimer's is runaway cell death.
—SANDRA STEINGRABER, Origins of Dementia, Part 2
Alzheimer's disease is classified in two ways: by heritability and by age of onset. Familial AD (FAD) follows a Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-61217454514684808352011-09-01T23:02:00.000-05:002011-09-01T23:02:44.238-05:00Walk to End Alzheimer's a successHere is our team from the 2011 Walk to End Alzheimer's in Tulsa, Oklahoma. There are a few more that aren't in the picture. It was so much fun, and there were so many people that came to walk and show their support. I am so happy to have been apart of this great fundraiser. I am already looking forward to next year, and hopefully get more members to walk with us. I Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0tag:blogger.com,1999:blog-765399252303799800.post-48771120212131697992011-08-21T17:07:00.000-05:002011-08-21T17:07:33.412-05:00Not giving up!!I haven't posted anything new in a while. I've been blank as to what to write now. I still have a story because I am still living my life. I just don't know where to pick up. I've become frustrated because I have been posting things about the Walk to end Alzheimer's on my facebook page, and other things about my family. I just don't think people are getting it. Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com2tag:blogger.com,1999:blog-765399252303799800.post-57565733498138315372011-08-09T15:30:00.000-05:002011-08-11T11:48:20.654-05:00DIANThis is the study I will be doing, that our family has been apart of for some time. I do not have a date set, but I have heard from the University and they have received my paperwork.
DIAN - A study opportunity for families with inherited early-onset AD The Dominantly Inherited
Alzheimer's Network (DIAN) study has been established by the National Institute on Aging of the National Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com4tag:blogger.com,1999:blog-765399252303799800.post-70468981786299666792011-08-08T15:06:00.000-05:002011-08-08T15:06:14.874-05:00Walk to End Alzheimer'sPlease click my link to view my page for the walk. I am very excited to be doing this, it has been a very long time since I have participated in the Alzheimer's walk. Of course your donation would be greatly appreciated, because this is to raise money for the Alzheimer's Association. Our team will be walking in Tulsa, OK on August 27th. The website has all the details.&Sherylhttp://www.blogger.com/profile/01282616782594770648noreply@blogger.com0