Friday, July 5, 2013

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, 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  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.

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!

Wednesday, June 19, 2013

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.

Monday, February 25, 2013

Change of Plans

In 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 same study, just a different location.  This location is much much closer for us and more convenient for traveling.
I have been in contact with them, but no dates are set at this exact time.
I will keep you all posted.

Sunday, January 27, 2013

Set date

The 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 there we will get to meet Niki Kapsambelis, the author that is writing a book about our family.  It is called "The Good Fight".  While my Aunt and some cousins were in Pittsburgh a couple of years ago she met them and was so inspired by the rareness of the disease and how positive our family is while dealing with it, that she wanted to write about us all.  How wonderful! She has met many of my cousins already.  I talked to her early last year and she has recently spoken with my mom about our own experiences.
It is in the publishing stages, I believe.  I can't wait for the finished product.

Saturday, January 12, 2013

Time 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 aunt have passed away from Early On-Set Alzheimer's, many are still struggling, and many are still participating in the research and are raising awareness.  I am so proud of them all.

I was interviewed by an author about a book she is writing about Alzheimer's, and she has spent a lot of time with family members and talked with most of us about our own experiences with the disease.  I can't wait to see the finished product. ( I will post details at a later time)

My sister and I are planning on participating in the research in Pittsburgh that the DeMoe family has been doing for many years now.  We are planning to go in March of this year.  We are still working out the details of this, but have decided we should go together and help with this great study.  That stirs up a roller coaster of emotions, but it has to be done for our future and the futures of the DeMoe family members.
I am very hopeful for the study because there are so many new discoveries and drugs they have found that weren't available when my dad was battling this disease.

I have found many groups that are helping others with Familial Early On-set that I would like to recognize, but will make a dedicated post for them.  I am so grateful for the people that recognize how rare this disease is and how much support they give.

I will post again soon.  I just wanted to let you all know I am back on board.  It is hard to find the time these days to get away to concentrate and write but I will.

Thank you to all that have checked in and kept me going and encouraged me to continue on my journey.