Stories

Annie

How I Got Involved

Diagnosed at 36

My name is Annie and I am a mother of two.  I have been been married to Joe for 20 years. Before I got married, I was very interested in a TV/Modeling career. I attended John Casablanca Modeling School and did some modeling in the late 80’s. I was a contestant in the 1987/1988 Miss NJ Pageant and the 2007 Mrs. NJ Pageant.

After my first child was born in 1995, I started to experience some of the early symptoms associated with young onset Parkinson’s disease. However, when I was pregnant with my second child, the symptoms disappeared. After the birth of my second child, the symptoms returned and I became very concerned. After four years of visiting general neurologists and movement disorder specialists, I was finally diagnosed with young onset Parkinson's disease by a doctor from UPenn in 2004 at the age of 36.

Currently, I view this disease as a personal challenge. I do not sit back and wonder why I received this diagnosis. Over the past four years, I have been involved in many aspects of the Parkinson’s community. In 2005, I started USA PD Pals, an online support & information group, with my friend Judy who also suffers with Parkinson's disease. USA PD-PALS made their debut at the 12th Annual Parkinson’s Unity Walk in 2006, raising over $17,000. After this top ten finish, I decided I could do even more the following year. I hosted the 1st Annual Have A Heart for Parkinson's Valentine Dinner Dance in February 2007 and raised over $7,400, the first portion of the $14,000 I ultimately raised for that year's Unity Walk. My team raised the same amount, catapulting us to a total of $28,000, and a top ten finish for the second year in a row.

From 2007-2009 I served as the 2nd Vice President on the board of New Jersey Chapter of the American Parkinson’s Disease Association, volunteered with the Parkinson’s Alliance and acted as team captain for USA PD-PALS. In addition to these activities, I self published my first children’s book A Tale of a Parkie Princess, which became available on www.barnesandnoble.com and other online book stores in March 2008.

I was honored to receive the 2005 Women Who Make Magic Award and the 2007 NJ APDA Excellence in Service Award. When I competed in the 2007 Mrs. NJ USA pageant, I received the People’s Choice Award and was 1st runner up for the Community Service Award.

In the summer of 2008, my family and I were selected to participate in a Parkinson's awareness campaign. The campaign, Living with Parkinson’s Disease, featured our family in a DVD and brochures which were distributed in doctors' offices. My story was also selected to appear in the Proud Hands of Parkinson’s coffee table book, which was launched in the spring 2008.

I've taken a little time for myself lately but am optimistic about the future. I am continuing to raise funds and awareness in hopes for a cure. I am excited about getting involved in APDA's brand new grassroots fundraising campaign which will launch before the end of this year. This new campaign will allow me and the groups I'm involved with to access all the tools we need to develop a successful event. It's also the first formal campaign that allows individuals and groups to focus on supporting APDA's young onset-specific programs  and services as well as important PD research.

One day I plan to start my own non-profit organization, one that will help Parkinson's patients and their families. Until then, I will continue to help the community in new and different ways.

10 Comments

Very inspired by your story, Annie. I'm in my thirties and having a difficult time finding a good neurologist in the northeast. I'm not too far from philly. Any chance you'd consider posting the name of the doctor you saw there?

michael, Oct 11, 2011

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Hi Michael

I go the Movement Disorder Center at UPenn,there is a group of Movement Disorder Specialists, I see Dr.Matthew Stern.
Hope this helps.

Annie Konopka, Oct 13, 2011

"However, when I was pregnant with my second child, the symptoms disappeared."

That's pretty interesting...

Steve, Oct 13, 2011

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Hi Annie, Your story has touched my heart,mind body and soul.I just want to share my story with you. I have been dating an X- NFL player that found out 4 years ago he had Parkinson's. Since then he has been dealing with the struggle everyday. The reason for me telling you my story. I wanted to know if you can give me advise how i can help him and my self cope with it. I want to know if you can explain to me how i can understand it better He is my world .. and I love him very much. Please help

Michelle, Oct 25, 2011

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Hi Michelle,
I think being a carepartner is just as difficult as being the patient, what works for me & my hubby is lots of communication and patience for both of u involved. I think getting involved
in a young onset patient support group would do you both alot of good. Your boyfriend is a very lucky man to have such a wonderful, caring person in his life. Support & education are key. Hope this helps
Annie

Annie Konopka, Nov 4, 2011

Hi Annie,
Thank you for your informative contribution. I care for my beautiful wife Mary and her PD was diagnosed some 18 years ago. We have been married for 46 years. It is great to witness her positive attitude, at times under difficult circumstances. I have only one question...why is it, only the most beautiful people are afflicted by Parkinsons?

Ivor Jones, Nov 2, 2011

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My name is Peggy. I live in Thessaloniki, Greece. I'm 63 years old and have had Parkinson's since I was 50 years old. I'm mad for having this disease and I have a hard time getting out, cause of the way people look at me - like I'm from another planet! My husband is trying very hard to cope with all my problems, but, I too think it would be good if there was something the family around you could read to help them accept you with your problems and how to help you fight them. My oldest daughter doesn't come around as often as she used to, and when I asked her why, she said it worries her to see me like that. Thank you for any help.

Peggy Apostolidou, Nov 3, 2011

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It sounds like you have made a good life for yourself, helping others with Parkinson's. Have your children noticed symptoms or asked you about them? I have a twelve year old who is becoming touchy about my poor memory and soft speech. I am trying to teach her to be understanding while also acknowledging her annoyance. I feel a bit at sea as to how to best deal with her reactions and how much to tell her. Any advice? Thanks

Suzanne de Kozan, Nov 3, 2011

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Ivor- I often ask myself the same question (just kidding) LOL thank you for the compliment and tell your beautiful to keep being positive and congratulations on 46 yrs of marriage.

Annie Konopka, Nov 15, 2011

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Ivor- I often ask myself the same question (just kidding) LOL thank you for the compliment and tell your beautiful to keep being positive and congratulations on 46 yrs of marriage.

Annie Konopka, Nov 15, 2011

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