Before my ex and I were married we talked about having children because of this disease. At that time they still did not know too much other then a form of Parkinson's. We both agreed that we would try for children. Where I was coming from is: one is never guaranteed how long to live and if by chance one of our children were to become ill with this disease he/she could do a lot in his/her life in the 40 some years. I also felt I had to put my faith in God. Medicine is always changing and I felt strong by the time my ex husband's generation came about there would be something there, maybe not a cure but something.
Eventually, the gene was identified for this disease and the doctor named the disease (his second choice) but there was not much interest by others to help with research since it is only one family that is affected here in the United States. 2001 The Des Moines Register ran a 3 day series article about the disease and devoted one article to the boys' grandfather. One week later my ex husband was fired from his job. Many companies are leery when they find out about a degenerative disease. This disease is like most neurological diseases it becomes activated in the 40s, however this is a rapid degenerative disease and typical life expectancy is 8 years. My ex's cousins reside in Montana.
My older two boys with their Grandpa Titler
As of today they are working on a breakthrough. If anyone is interested in making a donation, you may want to contact Dr. Wszolek. He is currently at The Mayo Clinic in Florida. He is the doctor that has dedicated the past 23 plus years.
If you are unable to make any donations, at least pray for this family. I can not even imagine what my ex-mother-in-law will have to go through. I know it was hard on her when she was losing her husband and to know now that two of her four children will eventually go through the same thing.
*Edit - 11/20/2012*
It has been nearly two years since I have published this post. In the two years, this post has had 2178 views from all of the world. I have had other people with different types of neurological diseases reach out to me for assistance with setting up a post similar. When I spoke to them, I asked how they found me and I was told they were referred to me by the Mayo Clinic in Florida. I feel great that I have been able to provide something for others to use and the doctors recognize what a value post like this can be. Educating is a big key in fighting any disease. I want to stress, I do not have the answers. I have just provided sources and information about this disease. Please contact the doctors at the Mayo Clinic. Before being tested for this disease one should go through genetic counseling to make sure you are going to be okay if the results come back that you do have the gene.
I am also including a comment, my ex-brother in law has posted within this blog. In case those who are reading do not read the feed back. He may be able to direct you to where you can go as well or provide you with the latest updates on this disease.
*Edit 8/10/2017: At this time please do not email Dave any longer. He will NOT be able to answer any questions any longer due to this disease. If I am able to find any other resources I will update this post.*
* Edit 3/13/2018: Please do not take me as an expert on this subject because I am not. My post is to share my experience with this disease and what I knew at the time of my original post. I do not have the answers but I pointed to the direction I knew. I am not sure if this doctor is still working for the Mayo Clinic in Florida. I do know my ex in laws are still going to the Mayo Clinic in Minnesota. Please follow up with the Mayo Clinic for doctors wh o may have your answers.*