Congratulations to Monnie Lindsay, recipient of the 2010 Alan Bonander Humanitarian Award

The Alan Bonander Humanitarian Award will be presented to Monnie Lindsay at the 16th Parkinson’s Unity Walk in Central Park.

In November 1993, Monnie Lindsay’s right arm stopped working.  She tried to file a fingernail on her left hand and her right arm wouldn’t move.  After a battery of tests, Monnie heard those 4 dreaded words: “you have Parkinson’s disease.”  She was 38 years old and 4 years out of law school.  Her brother, who had just been diagnosed with diabetes, advised:  “Learn as much as you can about the disease and then live (attitude-wise) as if you don’t have it.” 

She graduated from Georgetown University Law Center in 1989, having taken several courses in health law.  Prior to attending law school, she worked on Capitol Hill in the House Finance Office.  Before that, she was office manager and volunteer coordinator for a Congressional campaign.

After graduating from Georgetown, Monnie left Washington, D.C. and entered private practice with a large Chicago law firm.  There she practiced insurance law and some health law.  While working at the law firm, she was diagnosed with Parkinson’s disease.  Subsequently, Monnie became Assistant General Counsel at a large hospital outside Chicago, where her practice in large part involved government regulatory matters such as Medicare and Medicaid regulations.

While in Chicago, she joined the Board of Directors of the local chapter of the American Parkinson’s Disease Association.  While a member of that board, she set up the chapter’s respite program.  She also co-chaired the annual walk with Sue Laux. 

In 2001, Monnie reviewed her options.  She was 46 years old and already taking 6-7 Sinemet daily, plus a number of other medications, to hold her symptoms at bay.  She used the Internet to learn more about the disease and discovered a program using Asian techniques, and met with the people involved in this program.  To participate in this program, she had to wean herself off all of her Parkinson’s medications.  For many reasons, she decided to try it.  Beginning in January 2002, Monnie began very, very slowly to wean herself off of her Parkinson’s medications.  Monnie naively thought that she simply would have some trouble with walking, but about a year later, she had to leave the job, home and city that she adored and move back to her hometown of Omaha. 

Instead of simply having some trouble walking, she wound up in a wheelchair unable to move anything but her head.  She could not press the buttons on the TV remote to change the channel.  She could not feed herself or use the toilet on her own.  It sometimes required 45 minutes to get adjusted in bed at night.  It was a living nightmare.

But she was determined to see it through.  There were unexplained occasions when she suddenly got up and walked normally—they gave Monnie hope.  To keep her muscles from complete disuse, her brother-in-law and other family members or friends helped her skip twice a week (Monnie couldn’t walk, but could skip with support.)  Her nephews played “catch” with her.  They threw a soft, small toy to her and her arm reached up to catch it.

By May 2004, Monnie finally concluded that the program was not working and she went back on a therapeutic dose of Sinemet.  She will never forget the moment when her arms were suddenly freed from the lock that Parkinson’s had on them.  She was in the wheelchair at a fast food restaurant and tilted her head back and fed herself French fries like a little kid—just because she could.  Monnie began walking at home, then around the building, then around the complex.  She started working with a trainer to rebuild her strength. 

Monnie’s doctor began talking to her about deep brain stimulation (DBS), but he said she had to be emotionally ready for it.  Part of being emotionally ready for Monnie was being physically ready.  In June 2005, she underwent unilateral DBS surgery and in August 2005, she had the second surgery.  Monnie had two subsequent surgeries, one on each side.  One was due to a broken lead, likely because she had been doing jumping jacks or pilates.  What a difference DBS has made!

Monnie learned a lot from her experience, particularly about love—the love of her family and friends.  She learned about gratitude—how you can find many things to be grateful for each day even when you’re immobile in a wheelchair.  She learned about untapped sources of strength and courage and tenacity in herself.  She learned how important it is to keep a sense of humor and the healing power of laughter.  And she became a PAN advocate so that we can eradicate this disease so that no one else will ever have to undergo what she did.

PARKINSON’S DISEASE COMMUNITY WORK

For many years Monnie has had a passion for the intersection of law and policy, particularly as it relates to health care.  Although Parkinson’s disease has taken many things from her, it has given her many gifts as well—one being to allow her to follow that passion for policy.  In her work for the Parkinson’s Action Network (PAN), she tells people that “when you become an advocate, you cease being a victim.”

In March 2005, Monnie attended her first PAN Public Policy Forum.  She was excited and energized by what she saw and learned.  In August 2005, she became PAN’s Nebraska State Coordinator.  As Nebraska State Coordinator, Monnie has spoken to groups around the state to educate them about Parkinson’s disease and to raise awareness about PAN.  She has testified twice before the Nebraska legislature’s Judiciary Committee in favor of stem cell research.  Last fall, Monnie testified before the University of Nebraska’s Board of Regents, again in favor of stem cell research, where a move to ban the research at the University’s Medical Center failed.

Monnie has been instrumental in obtaining funding from The Michael J. Fox Foundation and the American Parkinson’s Disease Association (APDA) to restore the Nebraska Parkinson’s Disease Registry and then subsequent state funding to maintain it.  She currently serves on the committee overseeing the registry, and she has worked to promote the registry among researchers and members of the Parkinson’s community.

In early 2006, she became a member of PAN’s Grassroots Policy Committee, on which she served until 2009.  In fall, 2006, she joined PAN’s Board of Directors as a grassroots representative.  Monnie presently serves as Vice Chair of PAN’s Board of Directors.