2003 Top Individual Fund-Raiser Russell Ahlstrom Shares his Thoughts About PD
Interview by Trina Stokes, Event Manager, Parkinson's Unity Walk

Russell Ahlstrom Top Individual Fundraiser with Team YOPA

As an Author of the book, It's All in Your Head/Living and Coping with Parkinson's Disease, and the Director of the Mankato Area Parkinson's Education Program, Russ Ahlstrom graciously provided me his time to answer a few questions. Please read on to learn how he copes with Parkinson's and the action steps he takes to fight it.

Russell, when were you diagnosed with PD?

I was diagnosed in 1967 at the age of 20 while serving in the Air force. I have been living with PD for 39 years.

There was a long time, I did not want to deal with or face my disease. At one point, there was 5 to 6 years that I didn't want to go out of the house. In 1980 I read a book by Sidney Dorros called Accommodation without Surrender. This book helped me think about my circumstances and want to do something about it.

Do you have a support network that you are involved with? How has this resource helped you?

It wasn't until 1982 that I realized there was no support group in the area I lived, so I came to the conclusion that I should start one. It wasn't easy to decide to do this, but I took the step and started the Mankato Area Support Group. I began going to nursing homes and hospitals to raise awareness and share my story about PD and answer questions from patients and staff members.

My wife and daughter also cope with this disease. I always wondered how my wife could be with me for so many years. My wife married me after I had Parkinson's for 8 years.

Helping others to help themselves is what I try to do. The biggest thing about young onset, is they don't have patience. This impatience is not unwarranted but they take medication and don't give the body a chance to react to new medications and they are ready to go to the next one. It's one step at a time. Immediate results don't always happen. I have developed my own style of coping over the years and I realized that I had to cope with it in a manner that was workable for me.

When I was diagnosed there was no medication to speak of. I'm now in stage 4 of Parkinson's. I've gone through all the stages of medication. I've learned not to worry about things I cannot control. You do what you can do and I feel that I have lived a very fulfilled life. There is a lot of well meaning advice out there but its up to you.

Are you involved with other organizations?

I was ready to retire about 2 years ago. But when I caught wind of the statistics of Young Onset I wanted to do something about it. Tom Berdine with YOPA contacted me after reading my book and asked me to be an advisor of his Young Onset Association. I felt that I owed it to the Young Onset Community-I wanted to help young people deal with the disease in anyway I could. I'm far from being an expert but I feel by telling it like it is along with my story of success. I might possibly help others to help themselves. When it comes to PD there are no experts!

I spoke at the first annual Young Onset Parkinson's Disease Conference & Awareness Walk last year in Albuquerque New Mexico and delivered my message of hope. They didn't know whether to laugh or cry.

Russ, when is the conference held?

It was held on October 10-12. We had about 100 people and raised $8000.00 for research. I always travel with a wheelchair as my condition can change very abruptly but I managed to walk it and come through in good shape.

What was this distance of the Awareness Walk?

It was a 2k walk.

Russell, you raised over $7,000 for research and you were one of the top 10 fundraisers for this year's Parkinson's Unity Walk. How did you come to hear about the Walk in Central Park?

I heard about the Walk through Tom Berdine. We setup our team-Young Onset Parkinson's Association (YOPA).

While I was walking, I fell three times. With the help of my wife Dee and Jean Zwolinski of Buffalo New York, I jogged the last mile. By jogging, my legs kept moving but with me there is always a chance of falling with no warning.

As a team member of YOPA, which raised over $28,000 and was the Unity Walk's Top fundraising Team over several months approaching the Walk, how did you get the word out about Team YOPA?

I have been very proud of being with the YOPA team. Our original goal was $4,000. We didn't have any idea how well we would do. YOPA is young but our approach is cooperation at the grassroots level through support, information, awareness and education. Word got out through the Internet and word of mouth. I also worked with the local press and did interviews with TV and Radio. I sent three e-mails that helped raise the cooperation with the media. All members of the team can be proud of their efforts.

I raised over my goal but it wasn't too difficult because my contacts that I have met and worked with over the years. They were glad to support this cause to raise money for research.

One nice lady 80 years old said, "Russell, I want to give you money before I pass away" and sent in a donation.

Looking ahead, how do you feel more people can get involved in this fight for a cure?

Everybody needs to get involved and do his or her part. Parkinson's will not be solved overnight. It is a process and we need continuous cooperation within the Parkinson's community. This disease isn't about individuals-it is about everyone working together!

The government should not be considered the principal in funding. It has to include the general public and the only way is through proper understanding and awareness.

The general public doesn't truly understand Parkinson's unless they know someone or a family member has PD, and then there is still many question marks-Parkinson's isn't just tremor.

It's not just celebrities that bring awareness, it continuous education and support. These are the principle concepts that bring knowledge to the public. Without information and education PD would be an unknown and if the patient can't deal with the disease now with proper coping methods some may not be around to enjoy the fruits of the research efforts. We are the closest we have ever been to a cure and in my estimation it is about 7 to 10 years.

I have one last bit of advice-for anyone that has PD and the caregivers-have as much patience as possible and everything will work out, as we were not guaranteed anything for our life. If I can do what I have accomplished-anyone can do what they want. There is life beyond Parkinson's, but you work for it with proper attitude, some humor and faith.

I found that Russell's attitude and sense of humor was contagious. He was the first winner of the Sidney Dorros Memorial Award given by the National Parkinson's Foundation. He has played wheelchair basketball and likes to play golf and he goes adaptive skiing in Colorado. His closest friends call him "Lightning so Fast," because he gets the job done. Russell believes there is only one way to get the job done and that's the right way. He currently consults for the Parkinson's Resource Center at Primrose and is the Director of the Mankato Area Parkinson's Education Program. The center has given him an office and a computer for his use. It has been said that Russell is a celebrity-in a way-to the Parkinson's Community. All the proceeds from his book go to support YOPA.