Sunday, August 21, 2011

Not 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.  I do NOT want people's money (yes I've asked for donations, but that is part of doing the walk) I do NOT want people's sympathy, or to think I am asking anything of them. I do NOT want anyone to think I'm doing this all for attention.   I know to some this is all new to them, and by me being so public now with it all may seem strange.  I know that people have different illnesses in their families.  I know that everyone has lost or knows someone that has lost a loved one to some sort of illness or disease.  I am NOT saying that what are family has is any worse than anyone else's problems.  I know some people don't want to hear about sad depressing things, and I agree I don't either.  BUT...
I never accepted this disease when I was going through it with my own father, and now I have.  I am just letting people know what it is, what it does, and my family is right here going through it.  You don't have to be my friend because of it.   I may come across pushy with this all, but I either go full force with something or I don't go at all.  I haven't been tested yet, but I am, and if I have the gene or not I'm going to fight for all the people that are or will be going through it.  Right now, I want to stand up and fight for EVERY disease, and maybe someday I can get my foot in the door to do that. 
I always think to much about what other people think, and I let that get in the way sometimes of things I do.  I have very low self esteem, no matter how much my loved ones try to build me up.  I can't let that get in the way with this.  I just don't want anyone to think I am all of a sudden trying to get sympathy, or acknowledgement for something.  The only thing I want is to help my family, and anyone else get through this disease, and I want to do all I can to benefit towards research and a cure.
People that don't know someone personally might not pay much attention to how important awareness is, because they aren't or haven't experienced it.  I understand, because before my dad got sick I couldn't relate to many people's struggles. I understand that many people may already give and support a different association or foundation, and that is wonderful.  I don't expect everyone to drop what they are already doing and run to my families side.  I am doing this for the DeMoe family, and for right here where I live it also includes me and my children and my sister and her children.  So think whatever you want, say whatever you want, but I'm not going to stop talking about it. 
 I let my bitterness, and spitefulness get in the way to long with this disease.  I have opened up, I have let go, and I have accepted whatever God deals me. He has my life in His hands, and my families as well.

Tuesday, August 9, 2011


This 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 Institutes of Health (US) to bring together researchers who study genetic forms of Alzheimer's disease (AD). The DIAN research volunteers are members of families in which AD is dominantly inherited, meaning that about 50% of the individuals in each generation of a family develop AD, generally before age 60. These rare forms of AD are caused by a mutation in one of 3 genes. Each child of an affected parent has a 50% chance of inheriting the mutation. If they do, they will likely develop the dementia of AD at about the same age as their parent. Siblings who do not have the mutation have no greater risk of developing AD than someone without a family history of AD and will participate in DIAN as part of a comparison group for their mutation-carrying siblings. Individuals participating in DIAN are not required to know whether or not they carry a mutation. Should participants wish to learn their mutation status through genetic testing following genetic counseling, DIAN can assist with this process.
Research suggests that brain changes may occur years before actual Alzheimer's symptoms are detected. The major goal of DIAN is to study these changes in people who carry an AD mutation in order to determine how the disease process develops before there are any symptoms. Ultimately, knowledge gained from DIAN may lead to tests that detect people who still are normal but are at very high risk of developing dementia caused by AD. All DIAN participants will be members of families with dominantly inherited AD caused by a known mutation and may be ideal candidates to participate in possible future studies of drugs that may have the potential to halt the AD process and prevent dementia.
People from families with a known mutation causing AD are eligible to participate in DIAN and its studies of physical and mental changes that may predict future AD. These studies include:
• clinical interviews
• mental status testing
• brain scans, including magnetic resonance
imaging (MRI) and
positron emission tomography (PET)
• blood assays, including genetic studies
• assays of cerebrospinal fluid (CSF),
obtained by lumbar puncture (spinal
Presently, there are 10 DIAN study sites: 6 in the US, 1 in the United Kingdom, and 3 in Australia. Research volunteers travel to one of the sites for the studies, which are repeated every few years. It is expected that each round of DIAN studies will take about three days to complete. All DIAN assessments are for research purposes and are supported
by DIAN. Reasonable costs of travel to a study site, accommodations and meals
during study participation may also be covered by DIAN. Volunteers may receive payment for some study procedures; whether payment is offered and the amount will be determined by the
individual study site. DIAN participants need to:
• have a biological parent or sibling
with AD caused by a known mutation
• be at least 18 years of age
• speak and read English
• have someone who knows them well
and is willing to answer questions
about their memory and thinking.
Eligible individuals who volunteer to enroll in DIAN will contribute to this unique international effort to discover the basic causes of AD. At the same time, they must be highly committed,
because DIAN asks much from these volunteers in terms of time and testing.
It is anticipated that the improved understanding of the AD process will result in better tests to detect AD and eventually lead to therapies to treat or even prevent the illness. However, there
can be no guarantees of success in these areas, and almost certainly not within the next few years. DIAN volunteers who donate their valuable time to DIAN may not directly benefit themselves but hopefully will greatly help their children and grandchildren.
More information about DIAN can be
found at or by calling
the DIAN Global Coordinator at (314)

Monday, August 8, 2011

Walk to End Alzheimer's

Please 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.  Thank you so much~