Advocating for those with Parkinson's Disease

Four years ago, my recovery from shoulder surgery was not going well. At a post-surgical appointment in April, 2014, after unsuccessful physical therapy, my orthopaedic surgeon said, "I want you to see a neurologist."

One week later I was told, "You have Parkinson's disease." I was 52 years old, not-long divorced, about to lose my job, and gearing up to begin an MBA program at Willamette University in Portland.

Parkinson's disease affects all parts of my life - my gait, balance, depth perception, vision, cognitive and executive language function, and so much more. Life-numbing fatigue, like walking through deep sand in a rain storm, is a daily companion. I can't read for half an hour before the words trade places and hide behind a layer of fog, leaving behind headaches instead of comprehension. I can't write because the letters become microscopic by the end of a paragraph. My typing becomes an indecipherable code.

This disease caused a traumatic fall in December, 2016. The right of my face was crushed, my nose disintegrated, my skull fractured. The socket of my right eye was broken into a dozen free-floating pieces; my right eye-ball exploded.

They say Parkinson's is not fatal. It's what happens because of Parkinson's that kills us. Three surgeries later, titanium plates and screws hold my face together, my right eye is a painted prosthetic, and my body's immune system is attacking my left eye. I am terrified that soon I'll be blind.

My life has been drastically altered through no fault of my own, and I'm not alone. People with Parkinson's desperately need a drug that will not only decrease the symptoms that rob us of our lives. We need a cure.

That is why I went to Washington, DC, in March. To urge our government to increase its support of Parkinson's research. To join 300 advocates from around the country for two days of instruction, workshops, and advocacy training prior to a full day of meeting members of Congress.

In Washington I was exhausted. The constant muscle tension of Parkinson's, anxiety, and pain made sleep difficult. Monitoring medications and meals is vital to avoid "off" periods, the times when the medication wears off and symptoms increase. I spent hours being "on." It's what I do. It's always been my job to make people laugh, welcome them, watch out for kittens.

As is often the case with Parkinson's, however, I learned some valuable lessons. Number 1, it's not my job to do all of that all of the time. Sometimes it's my job to relax.

I am also learning (2) that it doesn't matter what others think. Most people don't notice when my right side doesn't work along with my left but I am going to do preboarding because I can't put my carry-on in the overhead without dropping it on my head, and I need more time to get situated.

Learning No. 3: I have a story to tell, and some will be better off from hearing it. They will know they are not alone. They will know they are strong. They will know their story is worth telling, too.

Learning No. 4: Just because things don't go as planned doesn't mean they don't go as planned. An unexpected storm dropped five inches of snow and shut down the Capitol. Advocacy Day was spent in the cavernous meeting room at the hotel as advocates used whatever method they could to make our voices heard.

I began by calling the offices of Senators Merkley and Wyden and Representative Walden. Emailing each Oregon congressperson. Tweeting. Posting updates on Facebook. I rescheduled my meeting with Rep. Walden for the following morning.

Learning No. 5: Risk can bring reward. Joined by Holly Chaimov, director of Parkinson's Resources of Oregon, I was able to share with Rep. Walden my experiences and the need for a cure for Parkinson's.

Rep. Walden was gracious, kind, and attentive as I explained the impact Parkinson's has had on my life. I used to be so smooth, quick with a fact or a joke, able to handle with ease the stress of meeting with CEOs, government officials, or 1,000 high school students.

Which leads to Learning No. 6: I can still communicate. I may pause, stop, or search. But I can communicate, tell stories, and exercise my love of language.

Learning No. 7: Parkinson's is hard, but giving up is harder. Everyone with Parkinson's disease has faced painful fatigue, self-doubt, and increased symptoms. Though I came one term short of earning that MBA degree from Willamette University, with help and encouragement I became an advocate. And we are doing some good.

The National Institutes of Health (NIH) received an increase in funding that will help offset a decrease of 22 percent that occurred from 2003 to 2015. The Department of Defense (DOD) finances the only federal research project on Parkinson's disease, and funding was increased for this vital research. Funding for the National Neurological Conditions Surveillance System was also approved. This database will enable scientists to track patterns and focus research for all neurological diseases.