Paula

May, 2004

My screen name is lizzy4451, but my real name is Paula. I was diagnosed with Parkinson's in 2001. Since then I've learned a ton about Parkinson's and have met the most wonderful people. I guess that's the best part about the disease - the wonderful, sincere, caring people that I've met. There is a natural bond between people with Parkinson's.

I'm 47, live in Indiana, married 22 years, and have two wonderful boys who are just-17 and almost-19. I work full-time in the Information Technology (computer) field as a database administrator. I love my job because I'm always learning and challenged. I've been VERY fortunate because my progression has been slow. I go to a fabulous movement disorder specialist at the Indiana University Medical Center who participates in many NIH studies and is very current on Parkinson's-related issues.

When I was first diagnosed with Parkinson's I was thirsty for knowledge. I quenched my thirst by reading books, surfing the internet and by chatting in PD chat rooms. I had never chatted before and didn't know what to expect (hence, the totally unrelated screen name of lizzy4451). My expectations were exceeded when I met wonderful people who were incredibly patient with my endless list of questions. The moderator of one of the then-popular chat rooms, Dumpstergang, said he'd never met anyone who asked so many questions. That's me!

My way of fighting back is by getting involved. I met another person from Indianapolis, Paul, who also had Parkinson's and wanted to do 'something'. There also was a high-profile politician, Scott, who announced he had young-onset pd. Paul, Scott, and I started a young-onset Parkinson's support group called Young Parkinson's of Indiana (www.YPIndiana.org) in May, 2003. We have a great core group and are continuing to get the word out about our group. We had a golf fundraiser last year and are starting to talk about a different fundraiser for this year. I'm also on the Board of the 'regular' Parkinson's support group whose members are primarily 60+ years old. It has been helpful to be on their Board because both groups are working toward the same common goal and work closely together.

I'm also the Indiana State Coordinator for a national organization called Parkinson's Action Network (http://www.parkinsonsaction.org/) or PAN. PAN is the national advocacy group for Parkinson's disease. PAN follows legislation on the federal and state level. Because of my involvement with PAN, I have attended the annual PAN Forum in Washington, DC to educate myself on medical and legislative issues involving Parkinson's and have lobbied with the US Senators and Congressmen from Indiana. I have also written articles and done talks about stem cells and other Parkinson's-related issues. I feel it's important that others are educated on Parkinson's issues so that, hopefully, they will become advocates for those of us with Parkinson's disease. As the folks from PLWP say, together we can make a difference!

Paula Tomlin
ptomlin3@comcast.net