Saturday, November 27, 2010

Pallido 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 who 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.




My older two boys with their Grandpa Titler

This January it will be 15 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 - 11/20/2012*
 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. 
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
 

 

29 comments:

  1. ***Edit*** This January will be 16 years since he passed.

    I did not go into how the disease affects them much because of the article. However, I will tell you what I noticed with my ex father-in-law. Near the end, my ex FIL, I feel was alert and knew what was going on. He would watch my older two play while we were at the nursing home. Occasionally I would catch a tear coming down his cheek as he watched them. See he could not interact that much and before we had our first, he would comment often to my ex MIL about a grandchild. The person who has the disease becomes basically trapped in his/her body. This is just what people observe. Please take the time to read the article. Knowledge is a key to this disease.

    ReplyDelete
    Replies
    1. Dave should not be looked at as an inspiration of any sorts. He is psychotic and ruined his family because of all this. What's the point.

      Delete
    2. To be tested for PPND, one is suppose to go through the same guidelines as Huntington's Disease. Counseling is the first step to see if the person can handle the outcome. I am not sure how he was tested if he did not go through counseling. This post is not to set up any one person as an inspiration. The purpose of this post is to educate people about this horrid disease. Your father has been willing to assist these people get information or direct them to doctors other than Dr. W. I do not have the answers for the more advanced questions people are asking me. I am not aware of the new information they are finding out about this disease. Anyone who is willing to assist people with getting information is welcome to assist them. However, by assisting it is not to be mistaken or to be viewed as an inspiration. How one deals with the disease and is able to live a productive life and make a difference that person should be an inspiration. To me, out of this whole entire story, your grandmother should be the inspiration. She did not accept the doctors diagnosis as Parkinson's Disease. She and your grandfather are the inspirations.

      Delete
  2. I know I have had several hits on this article. I hope whomever you are, you are able to find the information listed within helpful. Please make sure you click on the link regarding the docgtor. Maybe you can reach out to him and get assistance.

    ReplyDelete
  3. My family is affected by this disease, my father died from it and my sister is very ill at the moment. I was tested and have the gene mutation and pray every day that I will not get it and that I did not pass this on to my children. I currently take cinnamon extract each day as I found many articles that state it can inhibit tau aggregation which is the basis of the disease.

    ReplyDelete
  4. Maria, where do you live? If you are in the US I am sure you are a relative of my boys' side of the family. I pray every day for a break through and did as well for my boys. Now I pray for the rest of the family. I may not be married into that side of the family any longer but I am part of this, I had been married for 15 years to their father, you just can't walk away from something of this magnitude. I hope the articles have been helpful.

    I don't know if you have reached out to this doctor or not but he has dedicated his career and life to this disease. He may be of some assistance for you. I know they are also doing some research with those family members who have the gene. If you would like any more information, please email me. richjmylife@gmail.com

    ReplyDelete
  5. Jolene,
    I now live in the US but am part of the Irish family inflicted with this disease. I was wondering if you have any information relating to the possible effect of cinnamon extract on this illness. I pray that a breakthrough happens soon in the discovery of a cure.

    ReplyDelete
  6. Maria,
    I pray for the same thing. I would love for you to be able to talk to my ex-sister-in-law. She is very knowledgeable in this and has the gene herself. She has been included with the Doctor mentioned in the first link the entire time of his research because it was her father (my boys' grandfather) that sought his opinion in NE. She has been included with testing in Canada and Japan. Please email me at richjmylife@gmail.com so I can privately give you her email address. I spoke to her earlier tonight and she is very anxious to hear from you.

    As for the cinnamon extract I am not sure if it helps or not. Rhonda would be able to give her opinions on this as well.

    ReplyDelete
  7. I'm also interested in anything that can help my husband (in the US) who is also a descendant of Sarah Bott and beginning to show symptoms.

    ReplyDelete
  8. Dear Anonymous,

    You are a relative of my boys then. Please email me at richjmylife@gmail.com and I will give you my ex-sister-in-law's email address. I am sure she can connect you to the right direction. She too carries the gene.

    ReplyDelete
  9. I also am a relative of your ex-husband and your boys. Chet Newell was my great-grandfather. We're fortunate; my grandmother did not have the gene, though she lost most of her siblings to it, so it's out of my direct branch of the family. My mother does a lot of geneaology of our family as a hobby, and I remember when I became aware of the disease and we started tracking it through the research. Thanks for your post, and I am still hoping for that miracle cure myself.

    ReplyDelete
  10. This is such a wonderful useful resource that you are providing and you give it absent free of charge. I love seeing web sites that understand the value of providing a quality useful resource for free. It's the old what goes around comes around program.

    ReplyDelete
  11. Jolene,
    do you know anything about fetal stem cell treatment for this illness. I scheduled myself for a procedure on October 26th in the Ukraine with Emcell and pray that it will work.

    Maria

    ReplyDelete
  12. Maria,

    I do not know anything at this time. I just emailed the doctor asking his input. Once I have any feedback, I will pass it your way as soon as possible. You provided me your phone number once. I will even try to call you once I have it.

    ReplyDelete
  13. Maria, I hope your surgery went well. I still have not heard back from the doctor's office regarding the stem cell surgery. I am very disappointed I have no answers for you yet.

    ReplyDelete
  14. I am currently a caregiver of a woman diagnosed with this disease. I am searching for information to assist me with everyday therapeutic techniques as I believe her to be in the later stages. I am thoroughly educated and trained in Alzheimer's and Dementia but this is just different. I agree that it is more like she is trapped in her body. I am not looking for a miracle, I was hoping somebody who has also provided care for people with this diagnosis could give a little guidance to me. TIA
    Iowa In Home Health Provider

    ReplyDelete
  15. Thank you for this page.I am in the midwest my father and two of his sisters carry the gene. It is a horrible thing to watch a person go through. i am 30 with three children. i have a 50/50 chance from what i understand.i am not sure yet if i will get the testing.

    ReplyDelete
  16. My grandmother, mom, and uncle have all passed away from PPND. My brother has been tested and does not carry the gene, I on the other hand do not want to be tested to know. My brother went to Univ of Iowa for the test but because of how they treated my mom (saying she was a drunk) and blew her off, I won't take my dog there. My uncle who passed away, 3 of his 4children carry the gene. I live everyday like it's my last and don't think about it much. If I did I would be insane by now. Thanks for sharing this page.

    ReplyDelete
  17. Tracie

    I'm glad to hear Lanning doesn't have the gene. Last I knew one of the 4 was not tested, he was like you not wanting to know. We have met years ago. My ex is the one who does not have the gene.

    Enjoying life to it's fullest is the best way to live. Making many wonderful memories with your family.

    ReplyDelete
  18. Hi Jolene,
    I just realized that we were related by marriage, I am your "ex" cousin. The Uncle that I was talking about was your ex father in law, Wow...Yep Lanny does not have it which brings his sons chances of getting it very very small. Are you still on the southside of DSM?

    ReplyDelete
  19. 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

    ReplyDelete
  20. Hello, Jolene. I am so glad to have found your blog! My nephew's wife has PPND and he is navigating the waters of how to deal with the financial, emotional and logistical challenges. It would seem that a centralized location for information and resources would be beneficial. Have anyone thought about setting up a website? If not, I would be happy to look into it, or if they are working on one, I would be happy to assist in any way. Thanks!

    ReplyDelete
    Replies
    1. Melissa, I agree it would be great for a website. I do not think there is one at this point. If you want to reach out to Dave Titler dtitler@yahoo.com he is very active with this subject along with his cousin. He carries the gene as well. My blog is about his father, and he is one of my children's uncles who has the gene and will have PPND.

      Delete
    2. Hi, Jolene. There is now a website for PPND. It is www.ppndtoday.org. Would it be all right with you I if place a link on the site to this blog entry? I have been in contact with Dave Titler, Dr Wszolek, Amie Thompson and Marla Phillips, who has the non-profit foundation to help PPND research. I would like to place as much information on the site as possible. There is also a place to make PayPal donations to the non-profit foundation.

      Delete
    3. Melissa, please feel free to place a link to this blog entry. I sent a notification to you on your website. You may want to reach out to the Des Moines Register to see if they can provide a file or something about their three day article on the disease, the doctor, the family, and the research.

      Delete
  21. hello Jolene, any updates on treatment for this illness. I am suffering a lot with freezing up in movement lately.
    Maria

    ReplyDelete
    Replies
    1. Maria, I have not heard anything new but that doesn't mean there isn't any. Please contact Dave Titler at dtitler@yahoo.com he reaches out and will respond back to you. He is very active with information and he also carries the gene as well.

      Delete
  22. Jolene I have been in contact with Stemgenix with regard to autologous stem cell treatment do you have any information if this could possibly work or not.

    ReplyDelete
  23. Jolene I did not go through with the autologous stem cell treatment and still pray daily for the miracle of a cure I take cinnamon extract and fulvic acid daily in addition to my medication to try and inhibit the tau aggregation

    ReplyDelete

Thank you for stopping by and showing the love. I will reply back by email unless you have a no-reply email address set up and then I will reply within the comments.

Related Posts Plugin for WordPress, Blogger...