I live in Pennsylvania where the winters can be fierce. One morning the temperature was close to 0 degrees F and I needed to go to church to pick up some sandwiches I had ordered. As always, I made my way down the stairs in front of my home with ease. Stairs are a cinch. I can do stairs anytime, regardless of whether my meds are “on” or “off.” Perhaps they are a visual cue. After a few strides on the level ground however, the cold air hit my muscles, and I froze. This was not a regular freezing episode. My muscles were formally on strike. I took the next 10 minutes to inch my way to my car. It should’ve taken 10 seconds.
I called my sister from the car and asked her to come over and help me. She told me to stay in my car. We people with Parkinson’s are trying to hang on to our independence as much as we can. Naturally, I immediately got out of the car and tried to make it back inside on my own. When my sister arrived, I was only a few steps into the return trip. She teamed up with a neighbor to assist me the rest of the way back. It took us a few minutes to make the short walk to the bottom of the steps. The moment I got to the bottom of the staircase, I sprang to life, and bounded up the steps effortlessly. “It’s just one of the quirks about me and PD,” I told my bewildered neighbor. I wish the world were made of stairs.
This experience is somewhat typical of living with Parkinson’s. We live with a demanding disease. While I suffer from PD, I also live with PD. One of the very important lessons I have learned from more than 14 years of having Parkinson’s is that it is like many areas of life. PD is not black and white—it is gray. Suffering from PD and living with PD are not mutually exclusive.
Suffering
Let’s talk about the bad news first, and save the best for last. I would not be honest with myself or anyone else if I said I feel no pain, distress, or depression with PD, or if I did not acknowledge my broken dreams. When I’m in a store, and I freeze up, I consider that suffering. When the pills aren’t working at all I’m suffering.
Due to hormone fluctuations that are part of a woman’s period, her Parkinson’s disease usually worsens at that time. An article published in 2002 in the Journal of Advanced Nursing explored the issue. The 19 women in the study reported that during their periods:
- Parkinson’s disease symptoms were often exaggerated
- Parkinson’s medication effectiveness diminished
- "Off" times increased
- They experienced higher levels of pain and fatigue
Women who are affected this way must plan their week accordingly. Some women living with PD and other neurological diseases are still in their childbearing years. I call it crazy hormone week. It’s just one more thing to look out for.
Most men and women living with PD, regardless of their age, have experienced getting cramped up or rigid. I have had episodes when the muscles in my arm tighten. You want to relieve it so bad because it just hurts, but you can’t do anything about it because you’re so stiff. You struggle to find a place to start.
I am consistently reminded that I am not alone as I participate with the Parkinson's community. My friends and I often comment that the side effects such as nausea, lightheadedness, loss of concentration, and dyskinesia from the drugs can be debilitating.
We all have experienced people looking at us strangely. We’ve all heard the comments - innocent and insulting. On one trip to Cape May, New Jersey with my sister my medications were working great, and I was feeling great and acting “normal.” Still, I took my cane with me during our activities—just in case. On these days at the shore, where I was celebrating how much I was “on”, I still noticed people looking at me curiously. I was wondering why people would stare at the mere presence of a cane.
On another occasion, I was walking on the grass, next to the sidewalk. (Grass is often easier to walk on because it gives.) I was using a cane, wearing sunglasses in the bright summer sun, and I wasn’t exactly “on” that day. After a while, a sincere man approached me, presumably to help me find the sidewalk, and asked, “Miss, are you blind?”
I share my experiences because I know that you and others can relate. They are not complaints or sour grapes. I do not feel cheated in life. While life includes rich experiences in spite of PD, I would not claim that they offset the suffering completely.
Parkinson's disease has primarily affected my motor abilities. It began with tremors, rigidity, and slow movements. Added to the mix have been episdoes of freezing, and at times I may mildly flail about. I cannot say that I am living with PD and not suffering with PD. The two go together. One can find oneself with limitations. The simplest tasks that were always taken for granted can now take an inordinate amount of time.
However, I've learned to plan for these motor fluctuations. I watch my protein intake. If I am planning to go bowling after dinner, I will not eat that juicy, tender steak I like so much. It interferes with the absorption of my meds.
I take an aqua exercise class to improve my range of motion. But I live with PD doing all the exercise and "being good to myself" that I can.
Living
I’ve started many satisfying friendships over the last 14 years while living with PD. My church has been wonderful to me with this whole thing. During services, I walk around sometimes because I can’t sit still that long without getting stiff. If I’m late for something, people understand. My church is really like a family, and they have been so accommodating. One of the ministers said, “People say they can’t come to church because they have a bad hip, or this or that. I don’t care if you are in your pajamas, or in a cot in Fellowship Hall. Just come!”
There is an older man in the church who always comes up to me and says, “Be good to yourself.” That’s just four little words, they mean a lot. They keep me on track. If I don’t exercise, I think, ‘Oh, I’m not being good to myself.’
Natalie, a friend of mine, is in the 12th grade. I met her at church. She wrote a report about Parkinson’s, and asked me to come and participate in her class presentation. I was inspired by those students. Her teacher was working on a major paper for graduate school, and was so impressed by Natalie’s report and presentation that she changed the subject of her paper to Parkinson’s disease.
Another satisfying aspect of living involves my pet. My cat’s a mischievous little guy, and he sometimes takes advantage of me. If I’m having tremors, and I’m not moving too well, he can run up and give me a little nip on the leg. They tell you cats don’t need attention, but cats need attention just like dogs. If he wants attention, he’ll lick me twice. If I don’t respond, he gives me a little nip. My sister tells me it’s good that I have an aggressive cat, because it keeps me moving. I love my cat, even with those sharp teeth. I’m glad he keeps me moving!
Be Good To Yourself
Because we're human, it is only natural to feel frustration and depression. It’s important to do our best, and not wallow in our condition, or give up. It is a tricky balance, and I do not claim to always balance it well. I can’t deny that I get frustrated and depressed with Parkinson’s disease, or wallow in my condition at times. Some people say I shouldn’t wallow at all. However, I use the suffering to adapt with Parkinson’s disease so I can live a full, balanced life after all. Yes, I wish the world were made of stairs. However, the best we can do is be good to ourselves.
Be good to yourself!
Patricia Lightner has been living and suffering with Parkinson’s disease for 14 years. In 2006 the Parkinson’s Action Network awarded her the Murray Charters' award for her outstanding service to the Parkinson’s community, and for her advocacy efforts. She regularly contributes to My Parkinson's Info. She is the author of Parkinson's Disease and Me: Walking the Path, and she occasionally contributes freelance newspaper articles to the Harrisburg, Patriot-News. You can also visit her Web site, ParkinsonsDiseaseAndMe.com.