Wednesday, November 21, 2012

REPOST - PPND - Pallido Ponto Nigral Degneration

*Edit - 11/21/2012*


It has been nearly two years since I have published this post. In the two years, this post has had 2181 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 am reposting this.  For the original post and if you want to read comments please click HERE.


Saturday, November 27, 2010Pallido Ponto Nigral Degeneration (PPND)


When I met the boys' father, his father was just in the beginning stages of what they thought was Parkinson's disease only thing was it was not like normal Parkinson's disease. My ex's Mother and Father went to the University of Nebraska for a 3rd opinion and by the grace of God they found this wonderful doctor that has basically devoted 23 years to this disease.

(Click here to read an article about his research for this disease)

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. Here is a link to a series of articles that their hometown wrote.

This January it will be 16 years since the boys' grandfather passed away. Out of the four siblings 3 have been tested for the gene and one chooses not to know. 2 of the 3 carry the gene. My ex is the one who does not. What does this mean, you may ask? It means he will not become ill with this disease, nor any of his off springs, so my boys will not get this disease as well. I would have been thrilled if the results were all 3 did not carry the gene. This means the other 2 will eventually get this disease and their children will have a chance to have this gene as well. Many people are now becoming interested in this family because the research that the doctor and team have been working on may assist Alzheimer's. This disease affects 4 other families in the world, 1 in France, 2 in Japan, and 1 in Ireland.

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 - 11/21/2012*

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.

My name is Dave Titler and Jolene is talking about my dad and any family who wants to chat or needs information PLEASE contact me at dtitler@yahoo.com and I will help with whatever u want. I have the gene and I know all about the disease. Im in contact with cousins all over the U.S. and can help so please contact me

November 19, 2012 8:18 PM


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4 comments:

  1. What a n awful thing to happen to a family and I think you have a very open heart to be able to talk about your ex's in such an open way.. I do hope more research is done in order to assist those that get it... sad that his siblings will get it, but I am also glad that your children won't have that suffering to undergo... Our prayers are with all that are suffering at this time.. thank you for sharing this story.. I love reading your blogs, you are quite an inspirational person you know!!!

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  2. I suffer from this illness PPND AND WAS WONDERING if anyone knew if anti tau antibodies could help

    ReplyDelete
    Replies
    1. Maria, Please email Dave Titler at dtitler@yahoo.com He is on top of anything new regarding this disease.

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