Our Stories
Sharing thoughts on living with Parkinson's through the eyes of patients and caregivers

Parkinson's, Depression and Robin Williams Subscribe Email Print

In the past two weeks, we have seen an outpouring of support for the ALS Association through the Ice Bucket Challenge – even our Executive Director, Stacey Mann, participated in the Ice Bucket Challenge in support of a former board member’s father who passed away from ALS in 2011. We have also lost a genius mind to depression and, as recent news has revealed, Parkinson’s. Robin Williams made many smile, laugh and think, throughout his career. We remember him from the early days with his laugh out loud role in Mork and Mindy to more serious acting in Awakenings and countless other films that defined his career.

If we have learned anything in the last two weeks, it is that everyone loves to see their friends and family pour ice water over their heads and raise awareness and funds for a great cause. It has also become obvious that more attention needs to be paid to Parkinson’s and Depression.

Depression, in itself, needs to be taken very seriously. Discussion of mental illness is frowned upon in this country – it’s a fix what’s wrong with you, through therapy and pills, and move on-- attitude. However, those with mental illness know that it’s not that easy and the rest of us need to pay attention to their plight. What else can we learn from the tragic, early death of Robin Williams? Parkinson’s and Depression often go hand in hand and in fact, it can often be an overlooked symptom of Parkinson’s disease. If depression existed before the diagnosis of Parkinson’s disease, daily activities can be more difficult and motor symptoms of Parkinson’s may need medication sooner than if depression had not already existed. Recent research has said that up to 50 percent of people with Parkinson's disease may also suffer from depression. However, this number may be low, as the true number of people with depression and Parkinson's disease is difficult to determine, given that there are no standardized tests designed to evaluate depression symptoms in the context of Parkinson's disease. 

Parkinson’s, a progressive neurological disorder, does not affect anyone in the same way – some may experience depression and others may just have to adjust to mood swings. While Parkinson’s is not a terminal disease, like ALS, (see the differences between Parkinson's and ALS in this article) it is a disease that becomes increasingly worse as the years go by. The current treatments (the same medications that have been used for the last 40 years) only help control the tremors for a period of time – they are not a cure or a permanent treatment. What Parkinsonians and their loved ones need is not only an increased awareness of what Parkinson’s is and how it effect daily life (of caretakers and patients) but the necessity to push new treatments and assurance that science will help them live their lives as normally as possible. News that a possible vaccine for Parkinson’s may be on the horizon leaves all of us with high hopes. Until it passes the scrutiny of human trials and the FDA, we are left with supporting Parkinsonians in the best way we can – trying our best to improve daily life as much as we can.

By working with University of Maryland School of Medicine, we have been able to fund genetic research into Parkinson’s Disease and this year, we are able to support a study into the neurological affects of exercise on those with Parkinson’s.

Could it be that walking for fifteen minutes a day improves Parkinson’s symptoms? The only way to find out is through research. The only way to make that research happen is to fund it. The only way to fund it is by supporting the 5th Annual Hike the Park for Parkinson’s. By participating in Hike the Park for Parkinson’s you will not only help fund an exercise study, which will help improve the lives of countless Parkinsonians, you will also raise awareness for this disease. You will make a difference by letting everyone know that Parkinson’s tremors are not controllable, that sometimes Parkinson’s patients experience memory loss, at times they may feel extremely depressed, maybe experience extreme anxiety. You will also make it known that none of these symptoms are controllable by medication alone – none of these symptoms are something someone can just solve by sticking their hands in their pockets – it’s a disease that over one million Americans have. Over five million worldwide battle their bodies daily as they attempt to brush their teeth, tie their shoes or simply get out of bed. One out of one hundred people have Parkinson’s – that’s 460 in an average size baseball stadium. Isn’t that reason enough to participate in the Hike?

Raise awareness, increase funding and do it for someone you love or just like a little. Register today. Register Now. You won’t regret it, we promise. 

Nine Years with Parkinson's Subscribe Email Print

It began with a twitching in the left pinkie finger while sitting at my desk, which I rationalized as probably caused by stress from working long hours. During a weekend visit with my daughter Stacey, she asked if I had too much caffeine as she noticed my left hand shaking. Of course I said not to worry, may have been too much morning coffee. But, I started to become concerned, as the tremor started to become more evident. During a scheduled annual physical, I mentioned the tremor to the physician, and he said the word Parkinson’s, I was shocked but not familiar with this disease. He recommended a neurologist visit to confirm his initial diagnosis.

I was officially diagnosed in December 2005, Merry Christmas! As I told family and friends, they were certainly surprised and upset, but very supportive. I will always give my wife Beverly so much credit for her loving and caring encouragement. I had just started my dream home inspection business a few months earlier, a decision had to be made, continue working or not. We decided to continue as long as possible, trying to maintain a normal lifestyle. The business began to grow at a rapid pace. The Parkinson’s effects were controlled with medication, very few people noticed any tremor issues.

In 2009, Stacey told me of an idea to raise funding for Parkinson’s research, Promises for Parkinson’s, based on my love of hiking. Stacey had traveled with me on a Colorado River rafting trip that included a hike out of the Grand Canyon. Hike the Park for Parkinson’s, at Oregon Ridge Park in Hunt Valley began in September 2010. This year on September 6th we celebrate the 5th anniversary of this wonderful event. Thanks to family and friends volunteering their time and providing generous donations, almost $50,000 has been given to the University of Maryland Parkinson’s Movement Disorder Center. It is difficult to express enough gratitude for my daughter Stacey, she has invested many hours toward the goal of finding a cure, even when her family was experiencing a very serious medical issue.

As time has passed since the initial diagnosis, the disease symptoms have progressed. My new career was ended in 2011 as my neurologist strongly recommended discontinuing the inspection business due to balance concerns. Typical Parkinson’s issues have increased, more “off time”, slow movement periods, weakening speech and insufficient sleep. Each day with Parkinson’s is different, I never know when my “off times” will occur during the day, I do know that the disease will control my motor functions at least one period of time each day. However, I feel very fortunate to still have the physical capabilities to continue with most of my favorite activities, they may just take a little longer to complete. I am also very aware that some other Parkinson’s patients truly struggle to function every day. This progressive disease affects each individual differently, think about more than 5 million people worldwide dealing with the varying effects of Parkinson’s.

I think about the future, which is clouded with the unknown Parkinson’s progression. As mentioned earlier, I am extremely fortunate to have tremendous loving support from family and friends, the future is brighter because I know the support will always be there. Setting goals helps to lessen the uncertainty of the future years; watching my grandsons grow into strong young men, taking more time to enjoy life with my beautiful wife, family and friends. Continue fund raising in an effort to find a Parkinson’s cure for future generations. Enjoy life each day as much as possible.

My thoughts on living with Parkinson’s disease,

John Evans

Parkinson's Awareness Subscribe Email Print

“Dad, did you have too much coffee this morning?” I hesitantly inquired. Something was wrong – he knew it and I knew it. But he ended the conversation quickly, “Yeah, something like that.”


A month went by before I noticed it again. Three more months went by and finally the diagnosis came. Even though we had an idea of what it could be, hearing the words “Parkinson’s disease” made us all stop and reevaluate.


That was almost eight years ago. Each day, Parkinson’s poses a new challenge for my father, as it does for over one million Americans. Building model rockets for his grandchildren, creating beautiful furniture out of pieces of wood and capturing the world around him in breathtaking photographs have all been shelved due to Parkinson’s.


But what does it mean to have Parkinson's? The common answers vary from a tremor, trouble walking, shaky voice or, often, what Michael J. Fox has. Until my father was diagnosed, those are the answers I would have given. I had no idea Parkinson’s affects more people in the United States than multiple sclerosis, muscular dystrophy and ALS combined. As a family, we didn't know that one day zipping his jacket, brushing his teeth or walking around the block -- simple everyday tasks -- would prove to be difficult at times.


This month, the month of April, is Parkinson's Awareness Month. It sounds good in concept - pick a cause, something that needs attention and pick a month to make people "more aware".  The truth is that Parkinson's, a disease that affects one out of every one hundred people, deserves attention every single day. 


At Promises for Parkinson's, our mission is not only to fund scientific research, but to support Parkinsonians and their families fully.  One key to accomplishing this is to educate communities and spread awareness about Parkinson's disease.  It helps to know the initial symptoms, a tremor usually starting in a limb, fingers or hand; rigidity of the muscles; slowness in movement; changes in voice or handwriting; impaired balance; inability to steadily carry an object.


To fully understand Parkinson's, you have to know what happens within the body to cause the disease. The dopamine, or motor oil, in the brain basically dries up. In fact by the time you are diagnosed, nearly 80% of your dopamine is gone. Now we all know what happens when you don't put motor oil in your car. So imagine what happens to your body without dopamine or, the body's motor oil.  You put shampoo in your hand, but you can't make your hand move to your head to deposit the shampoo.  You want to take a step forward, but your legs aren't getting the message. Having Parkinson's is a battle every single day, a battle against yourself.


I've learned about Parkinson's by watching my father battle his body, by doing research and by talking to people affected by the disease.  Sharing stories and experiences is how we learn, it's how we become aware. If you are a Parkinsonian or your life has been touched by Parkinson's in some way, we want to hear your story. We want to pass your story on, use it to educate others, to create the much needed awareness of Parkinson's disease -- not just during the month of April, but every day.