Parkinson’s disease (PD) is a chronic progressive and incurable movement disorder. 60,000 people are diagnosed with PD each year. Not one person will be told what specific symptoms the future holds, how quickly PD will progress and that PD medication side effects can be as debilitating as the disease itself.
I was diagnosed in March of 2004. The last 12 years have been challenging, to say the least. In the beginning the lack of never knowing what symptoms will progress or what new ones will appear made it difficult to devise a concise treatment plan. My neurologist could only look at my present symptoms and use her experience to decide which medications to prescribe.
I not only deal with my PD symptoms, but also with side effects of the five medications I take daily. They include freezing, difficulty walking when meds are wearing off, dry mouth, speech pronunciation, loss of smell and taste, difficulty swallowing and sleeping problems. Anxiety is, at times, overwhelming. But at least I don’t experience each symptom every day. I can go a week and not have gait or freezing issues, but then again, I can have two days when my symptoms are relentless.
Family, carpentry, gardening, photography and working at my church were my passions prior to diagnosis, and I wanted to continue them all. In order to do so I realized that I needed a strategy for living with and combating Parkinson’s. I made the decision that I was not going to allow this illness to alter my lifestyle.
One day at a craft show I came across an inspirational saying in carved wood that said, “THE ONLY DISABILITY IN LIFE IS A BAD ATTITUDE.” This simple saying became my driving force. I realized that my attitude was the key factor in accepting I had PD and that I had to meet what challenges lie ahead. I had to learn to move past the “what ifs” and uncertainties.
I became militant about my medication regimen, taking exact dosages at scheduled times. A continuing presence of each drug in my system was vital to controlling my symptoms.
I also began living with some daily concrete principles:
- I had to stop worrying about the progression of my present symptoms and if new ones would develop. Worrying gives you something to do, but doesn’t get you anywhere. I don’t believe the saying, “We write our life story” as I didn’t choose my eye color, to be exposed to Agent Orange and I definitely not PD. I can choose to control what is within my power.
- I believe constant movement is of prime importance in the fight against PD. A body in motion tends to stay in motion. So no matter how you feel GET UP, DRESS UP, SHOW UP AND NEVER GIVE UP.
- I begin each day at 6:00 a.m. I set goals and I know what I want to accomplish whether it be at church, in my garden, or working on a piece of furniture. If you believe you can you’re half way there. My attitude demands I accept nothing less than 100% effort of myself.
- I strive every day to walk 10,000 steps. I use a Fit Bit to track my steps. I now average 12,368 steps per day (about 6.5 miles). My best day was 20,084 steps.
- I play Wii console games to help maintain my balance and strength. It’s fun and helps improve movement and coordination. It challenges you to improve because you want to reach higher levels of difficulty.
- Photography not only helps me forget about my PD, but it also gives me quality time with my younger daughter since she enjoys it too. We are most fascinated by taking pictures of nature and all its glory. We frame and display our favorite photos throughout our homes.
- Gardening is self- fulfilling. It helps me get my mind off those aches and pains. I take a lot of pride in the flowers that grow all around our home — from roses to day lilies to tropical canna. I get to spend time with my older daughter, who helps me.
- Playing brain games on the computer helps maintain and improve knowledge. I challenge myself to learn new things. I’ve been told that learning something new helps the brain produce new cells. I hope that regenerating new cells can help slow memory loss.
- I make oak furniture. I have made more than 100 pieces of furniture while living with PD.
As you can see, I stay busy doing the things I enjoy. At the end of each day I have a sense of pride and accomplishment. My days belong to me and not PD.
There is no medicine like hope. Hope will lead you to a positive attitude, which makes you believe there is nothing you can’t do, even with PD. Your life doesn’t have to end just because you have a movement disorder. Challenge yourself, have a positive attitude and have faith in God.
I would like to thank NPF for the opportunity to share my story and I hope it can help someone who is having difficulty dealing with PD.