When I found out I had a lump in my left breast in 2011, people's reactions were in abundance with lots of acknowledgement of encouraging words. The thought of breast cancer was enough to solicit many sympathetic reactions amongst anyone who knew of my situation. However, when I was officially diagnosed with Parkinson's disease in 2013, I can honestly say that more than 75% of the people who knew about my diagnosis did not react with any acknowledgement of encouraging words or sympathy. It felt like I just told people I had a cold, and it was not a big deal. So, why the difference you ask? I had thought much about this over the years. I think the misconception and lack of knowledge about Parkinson's disease are the reasons why people think having PD is no big deal. Unfortunately, it couldn't be more further from the truth.
Did I know anything about PD before my diagnosis? Honestly, NO! Zippo, nada, clueless......I was. All I knew was Muhammad Ali, Michael J. Fox had it and it was an old person's disease. I knew people with PD (PWP) move slower, have tremors and it is not a disease that will kill you like cancer. Sounds harmless, easy and painless, right? Having lived with PD for over 2 years now, I have the knowledge and experiences that PD may very well be worse than cancer.
When someone shares that they have cancer, our immediate thought is the horrific chemotherapy, pain, loss of hair and possible impending doom of death. These thoughts cause us to feel sympathy and empathy for people inflicted with cancer. People in general know so much more about cancer and its effects. They often have known someone in their lifetime with this disease, and they can draw from those emotions when someone else shares they have cancer too. However when someone shares they have PD, I am almost positive people's mind draw a blank as they lack knowledge about it and/or cannot relate to this disease. Just because PWP do not show the battle scars of a cancer patient like their loss of hair and weight from chemo, it definitely does not mean life is normal and easy. PWP's struggles/challenges are more private and often, many live in their private "hell". People have commented that I do not look sick and have often complimented me on how good I look considering I have PD. But they do not know the daily struggles I face every moment for if they do, they'll know I am not well.
Just imagine tying your feet with heavy cement blocks and walking uphill. This is how I feel every time I take a step to walk. When I am playing tug-of-war with my toilet paper because I lack the strength to tear it the first try, I know doing anything else requiring strength will be a challenge. Getting dressed to go to work is a challenge and I am exhausted even before my day starts. Putting on my pants is a struggle and even putting my shirt over my head leave me all tangled up as my muscles/movement is not cooperating with my brain. From the time we wake up and even when we are asleep (like tossing and turning in bed), everything we do is movement and motion related. With PD, the disease does everything in its power to stop that automatic natural process of movements. So, just imagine everything you do that require movement, you have a force consistently working against you and preventing your body to do what it is supposed to do. Sounds exhausting and frustrating, right? You bet. That's why PWP get tired so easily. It is a daily and constant battle which only will get worse in time. Last Saturday, it took me almost 3 hours to swiffer my dining and living room because I was having trouble with my balance and the strength to get it cleaned right the first round. I broke down in tears because I was so tired and frustrated of not being able to do the smallest and menial tasks. Living with PD is also a daily psychological battle. PWP all know that this is a degenerative progressive disease which means unless there is a cure, there is really no hope and no chance of us getting or feeling remotely better. So every morning when we wake up, we have to will ourselves and body to fight through our challenges. We have to mentally, emotionally and physically make a choice to push through this disease no matter what. With cancer, people know if their chemo treatment is successful, they can return to their normal lives again. With PD, our current prognosis is we will never get better and our lives can never be normal again unless a miracle or cure happens in our lifetime. PWP also live with pain from the moment they wake up and even in their sleep. The disease causes rigidity in our bones and joints which then transcends into pain as our movement and motion is now unnatural, stiff and labored. We also face psychological/emotional challenges because people tend to judge unkindly on this disease due to lack of knowledge. PWP have been accused of being drunk because of balance issues, young PWP have often been stared down on and ridiculed because we move too slow for someone our age or accused of being lazy as we tend to get tired easily. Some PWP are so self-conscious about their tremors, weird gait and dyskinesia (uncontrolled snake-like body movements) that they become a recluse in their own homes. I can totally relate as I try to hide my hands under the table when my tremors are bad and I am self-conscious about it. Our confidence is broken down and reduced that we need to remind ourselves that it is okay to be different. Many advanced PWP are not able to drive or take care of themselves and require a care-taker. Parkinson's disease is also a very costly one. The medication alone is about $4,000 per month, and the meds are needed for the rest of the PWP lives to control the symptoms until a cure is found.
Cancer is a horrible disease and I am not making light of it. However, with April being Parkinson's Awareness month, I need people to understand that PD is as horrific as the most feared cancer. It is predicted that another 60,000 cases of PD will be diagnosed this year in addition to the million of Americans living with this disease now. We all need to help find a cure. My greatest fear now is for my children, grandchildren or great grandchildren to be inflicted with PD. I want a cure more so for them than myself. I want to do everything in my power to protect them from this horrible disease. If anyone can consider contributing to this good cause, please donate to Michael J. Fox Foundation which leads the community in finding a cure for PD. Please watch this video Faces of Parkinson's Disease (if reading blog from your computer, turn off music box on top left before watching video) which shows some of the people living with PD now who are choosing to fight for their lives. PD is non-discriminating as some of the PWP in our support groups are as young as 14 years old. It goes to show you PD is definitely NOT an old person's disease. So when you come across a person with PD next, please do not tell them they don't look sick or think that PD is not big deal. It is a big deal and we pray that people can be sensitive to PWP. Please pray for us and help us find a cure. Together, we can all make a difference. God bless.
**Please take a moment to check out Gimme a Break, Humor Me and other pages. (can't page from cellphones, only from computers)
