First DIAN visit

We 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. All the people that make this study happen were so awesome.  They were so helpful with information and making sure we understood the whole process all along the way. They really made the entire experience as easy as possible for us.  My sister and I had tests at different times, usually back to back, so we didn't get much sight seeing in but we got to go eat at some really great restaurants.
We got to meet Dr. Bateman,  http://neuro.wustl.edu/aboutus/facultybiographies/bateman/ and got to talk with him about the drug trials they are doing.  It was an honor to meet him.  We also met Dr. Morris at the Knight ADRC http://alzheimer.wustl.edu/.  I would recommend reading about both doctors and what they have accomplished and what they are working towards for Alzheimer's.
The progress they have made since my dad was diagnosed has been amazing.  They have learned so much and are so dedicated to finding out more.  It really gives me hope.
We did not do the genetic testing while we were there, that is something we can do at a local facility.  As of now, I am still not doing that test, but my sister is considering it.  Any children who have a parent with the confirmed mutated gene that causes dominantly inherited Alzheimer's disease can participate in the drug trials they also offer as part of the study.  http://www.alzforum.org/new/detail.asp?id=3289

We go back in three years to do the same tests, but this time I will know what to expect and won't be so nervous.  I am happy that we got to do this and so thankful that my sister and I got to do it together.
We are tough girls that can handle anything life throws our way and we believe that someday there will be a cure for Alzheimer's disease.

I want to thank my mom and husband for being there with us encouraging us, supporting us, and loving us every step of the way.  I wouldn't want anyone else by my side.  I want to also thank the rest of the family and our friends for showing their support and love. It really means a lot!

DIAN 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 will test for three days.  It is such a privilege to be able to do this, yet a little scary too. 

Several of my cousins have done this study and I am very proud of them for doing so.  There are a bunch of us DeMoes and even though we live so far away we are still doing this together. 

For those of you that aren’t familiar with the DIAN study I would like to tell you what we are about to do.  DIAN stands for Dominant Inherited Alzheimer Network.  It is an international research partnership of centers, which study a rare form of Alzheimer’s disease that is caused by a gene mutation.  We are doing this study for doctors and scientists to better understand the genetically mutated form of Alzheimer’s, which will lead to better tests and treatments.  There is no cure, but they have come so far just in the last 10 years with treatments and medication it is now possible to slow down the progression of the disease and hopefully with continued research and development, may eventually even stop it altogether.  Because my dad had this mutated gene, my sister and I both have a 50% chance of carrying the gene.  This study will collect data and tissue from us so researchers can determine what changes occur before and after Alzheimer’s disease symptoms start.

On Monday we will take a psychometric test then an MRI.  Tuesday we will have a lumbar puncture done then injected with an imaging tracer for the PET scan.  I know I will not be able to, but I think it would be so cool to be able to see what they will see in my brain.  I love that kind of stuff.   Then on Wednesday we will do another PET scan with a different type of tracer.  Once we are finished with that we will be coming home.   

Oh, one last thought.  If anybody knows of any good restaurants or fun stuff to do in the St. Louis area, feel free to share them with me.

Just 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.  UGH!!  Huge frustration.  My hubby rescued our ancient computer once again, and somehow got it back up and running to its capability.   He has fixed it's problems to many times over the past 10 years. It will be thrown through the window one of these days, I'm sure of it.  jk    Maybe Santa will bring us a new one.  hee hee! 
I have figured out the design part of the website program I am using... for the most part.  Now I have to put content on it. I get so excited about what it "could" be, then get discouraged because I don't want it to be just "another" site.  The ones out there are already so great!    I want it to be useful for people and helpful, but now I am getting overwhelmed with all the things I am finding.  There is so much information about Alzheimer's then I ever knew.  There are so many more people out there dealing with Early On-set Alzheimer's then I even knew existed.  The resources, groups, blogs, organizations, all of it, is so much broader then when my father was alive.  The main purpose, of course, is to help find a cure and I am not exactly sure how to do that.  I will keep on with it though, because I'm not giving up.
 I will keep ya updated.   =)   
Everyone enjoy your beautiful Fall days!

Until next time,