PatientsLikeMe ™

Walking out of a doctor's office with a diagnosis of Parkinson's disease can be tough for anybody but much tougher for those of us in the young onset category (under 50 years of age). Challenges such as careers, families, relationships, and finances are a great concern with those of us faced with this startling diagnosis.

Having been diagnosed with Parkinson's disease in 2000 at the age of 33, I found myself at the beginning of a journey that would change my life for the good. Like most young onset my diagnosis came after a long road (about a year) of responses such as "you are too young" or "could be depression." It's frustrating, to say the least, especially since the medical community continues to say to young patients, "people your age don't get Parkinson's disease."

My Story

I medically retired with a disability rating of 80% from the US Air Force in June 2001 after a distinguished 16 year career as a *SIGINT Analyst (*Sigint Intelligence) at various TOP SECRET National Security Agency (NSA) collection facilities around the world.

Upon returning home to Albuquerque iI subitted and was approved for 80% of that 805 as a tax free benefit from the VA.

In Ocober 2001 the VA sent me to the Univ of Phoenix to get my MCSE (Microsoft Certification).

In March 2002 I returned to te workforce as an IT Specialist for the Dept of Energy/National Nuclear Securiity Agency/Office Of Secure Transportation.

My diagnosis coupled with a divorce and a sudden end to a 16-year military career due to the diagnosis, put me on the ropes for a good two years. Looking back, as well as ahead, the diagnosis has proven to be one of the best things that ever happened to me. Over the last four years of "official Parkinson's" I have had the pleasure of meeting some incredible people and working with some great organizations.

Following a 12-round fight with depression that had me ready to give up and succumb to being on disability for the rest of my life, my website, www.YoungParkinsons.com, was born. The intent was to connect with others who were in the same situation that I was, as well as to ensure that future young onset did not have to go through the diagnosis alone. If I could have reached just one person, that would have been fine with me.

Little did I know thousands of young onset would soon be coming out of the closet!
 

In 2002 I attended a public policy forum in Washington DC, put on by the Parkinson's Action Network (PAN). This was quite an introduction to advocacy and lobbying. In the airport on the way home I met several more energetic and committed young people with PD, and that is where the idea of a Young Onset Parkinson's Association (YOPA) began. I am always blown away by what this organization accomplishes using a volunteer force comprised of young people with Parkinson's disease. Together, in the last two years, we have raised over $60,000 for research and have also established a working partnership with APDA. In addition we planned three national Parkinson's disease symposiums, created a Christmas fund for those having a hard time during the holidays, and produced a Public Service Announcement (PSA) about young-onset PD that has played on television across the nation.

Careers

I have gone back to work full time as an IT Technician for the Department of Energy here in Albuquerque and am very lucky to have such an understanding employer. Each day is a challenge. I get up every morning wondering if it will be my last day of work as I face the daily challenge of facing my four-hour "on/off" fluctuations which leave my for the most part immobile for a good two hours each work day. But I struggle through it and continue to fight off the urge to give up. 

Family 

  My children live 500 miles away and join up with me every major school holiday. At first I found myself feeling sorry that I couldn't always keep up the pace that a 14, 12, and 8-year old could keep. But some honest discussion with them about "off" times proved to give them an understanding. I push myself hard to be the dad that they deserve and am always there for them to talk to or get out and enjoy life with. Just this past month we walked for three hours in Carlsbad Caverns, took a two-hour river rafting experience, and luged down a mile-and-a-half slide at Purgatory in Colorado. Parkinson's or not, we all have to continue to be a father and/or spouse.

Relationships

This is perhaps the hardest hit area of a diagnosis of young onset Parkinson's in my opinion. Over the last few years I have seen too more marriages ended and relationships broken up than any of you could imagine. In each case Parkinson's played some role. Some of the factors leading to this are: high sex drive, low sex drive, gambling, or simply the other person not being able to deal with their partner having a progressive disease.

I have been in a new relationship for three years now and it has been difficult at times. Fortunately she is very knowledgeable and active in my Parkinson's endeavors. Sometimes I get upset when she tries to help me do things (like get dressed) but without her I am not sure if I would make it.

Thank your partner for staying with you and let them now how much you care.

Words Of Advice To Current & Future Young People PD

1. Don't sit around waiting for a cure. Continue to live your life to the best of your ability.
2. Don't hide your symptoms or diagnosis. Use both to educate others that Parkinson's is no longer just for grandparents.
3. Work with your doctor. If a medication is not working let them now.
4. Keep a daily journal (med times, on/off times, food) so you can let your doctor know how you have been doing.
5. Community involvement. Write articles regarding young onset Parkinson's and have them placed in your local paper to raise awareness. Do radio and television interviews.
6. Stay fit. Exercise! Join a gym, swim, walk, do aerobics.
7. Attend national events-symposiums, walks, fundraisers. Many of those are directed at young onset and are a great way to meet those in our age group.
8. Check out message boards and chat rooms. There are many out there and more popping up every day. They can provide a great deal of support.
9. Keep working. Whether as a paid employee or as a volunteer at a hospital or other location.
10. Take your medicine as prescribed. They won't work if you take them irresponsibly.