PD is so unpredictable. As it changes from day to day, moment by moment, second by second, sometimes you don’t know what to expect. Sometimes you just have to take it as it comes.
The pain is hard to deal with because there’s not much to be done about it. The medications don’t wipe it out completely, if at all. And when the pain of dystonia hits you — an extra additive that sometimes goes along with having PD — it can be brutal. First, you feel it coming on. Then, you watch as your muscles contract, contort, and cramp into a stiffness that only can be rubbed away at the cost of more pain.
It is like a slow blow to the body leaving behind the feeling of being brutally beaten at one place of contact, not leaving any scars for the world to see. It is a pain you carry like a bruise (once it passes), reminding you that you are no longer in control. The disease now decides when and where you will experience what and how, and there is no forewarning. There is no grace given by the little monster we call Parkinson’s disease.
There also is not an exorbitant amount of grace given by Parkinson’s disease for other symptoms one may have to endure. Like dyskinesia — the uncontrollable flailing about one may experience, not due to Parkinson’s disease necessarily, but caused by the medicinal cocktails one partakes of to help with the tremors PD is most well-known known for. For quite a number of people living with PD, this may be the hardest part of their journey with Parkinson’s disease. The uncontrolled journey of PD.
There are several more factors that play into a life of living with PD, and they are as different to each participant as night is to day.
As I sat in my doctor’s office more than 10 years ago and asked new questions regarding an old disease, it never occurred to me to ask about pain. My knowledge and wisdom regarding PD were more limited than they are today. My learning curve wasn’t as great. I never would have thought that the kind of pain dystonia brings would be a part of my journey because I didn’t know pain existed as part of the plethora of symptoms one may have to endure with this little monster.
It is one of those symptoms they call invisible in Parkinson’s disease, one no one else may see, and few can understand. But it is real and it is a hard one to put up with.
A friend wrote me recently about her struggles with PD. She said a man in her church passed away from a very painful cancer. He kept praying for God to take away his pain or to take him away. Then he had a dream about Jesus. In his dream, Jesus told him that “pain is part of the journey.”
Pain is indeed a part of the journey. We can allow it to make us bitter or make us humble, vulnerable or closed off, holy or incomplete.
My friend also said her dad used to tell her that “some days are diamonds and some days are stones, but notice — they are both hard.”
You have to take the good with the bad. And there will be hard days, days of darkness, days of pain. The stone days. But there will be good days — diamond days. Days when the dyskinesia is under control. Days when the pain has subsided. Those are the diamond days. The days to sparkle. The days to shine. The days to soak in the reprieve of the pain-filled ones and call them … grace. Call them mercy.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s Disease.