“Life is too deep for words, so don’t try to describe it, just live it.” C. S. Lewis
“Enjoy when you can, and endure when you must.” Johann Wolfgang von Goethe
Live Each Day: Every day, you accomplish something, and it makes you feel alive; you are alive. Every day you try to do something to deal with your Parkinson’s, that also matters. Recently, I posted the following quote and remarked that it was my 2021 mantra: “Stop existing in life and start living in life. Stop accepting influence from your Parkinson’s, and start challenging its impact on your life. Living upstages existing.” I also included the following pictures with my quote (see below). Interestingly, several people have asked me to expand on what was the message I was trying to convey to everyone?
“The most valuable lessons in life cannot be taught, they must be experienced.” Liam Payne
Stay Focused on A Better Life: Only you know how your life is going. Are you doing enough? Can you do more to deal with your Parkinson’s? Do you know enough about your Parkinson’s to do more? Precisely what would you do to live better? Everyone has to answer this question whether or not you have Parkinson’s. We have to balance life, work, love, family, friends, and Parkinson’s. We all have to be aware of the overbearing presence of the COVID-19 pandemic. I cannot tell you how to do it, but living your life with Parkinson’s takes effort; some days, it takes a lot of effort on your part. Parkinson’s is not going away on its own; thus, do as much as you can to live a better life.
“Everyone is trying to accomplish something big, not realizing that life is made up of little things.” Frank A. Clark
Stay Restless, Stop Existing, and Start Living: Maybe you have had Parkinson’s for more than ten years, and your effort is just not responding anymore. Alternatively, perhaps you have only had the Parkinson’s diagnosis for less than one year. You are still learning about your disorder. You are willing and ready to respond. This blog post is for both of these People-with-Parkinson’s. Many different community sites and organizations now focus on advising about Parkinson’s, an extensive and endless supply of information. I am not saying one is better than the other. I am not saying mine is better. But all these different sites put you in a better situation to assess what you can do to live better and go beyond just existing.
“All great things have small beginnings.” Peter Senge
Ten Things to Keep You Living and Not Just Existing With Parkinson’s : Always remind yourself that you are the sum of your effort to living and dealing with your Parkinson’s. By this, I mean some days you may work harder at it than others. Still, ultimately, it is a summation of your effort that makes up your ability to live and not exist in the presence of your Parkinson’s. Here are a few things to consider:
- What makes you happy? Think about it; think deeply about what do you do every day that makes you happy. Your Parkinson’s will not like you being happy.
- Stay busy; be active every day for many hours during the day. Do not just sit. Your Parkinson’s would prefer to have you sedentary doing as little as possible.
- Make sure you get plenty of sleep and the best quality kind of sleep. You know you used to get it before you had Parkinson’s. Your Parkinson’s would prefer to do whatever it can to keep you from sleeping because you being tired and listless gives an advantage to Parkinson’s.
- Be grateful. I know it’s a challenging concept since you have Parkinson’s. Amidst the chaos created by Parkinson’s, there are likely aspects you can remain grateful for in your life. Focus on those matters and be grateful and tell those that they matter the most.
- The ray of positivity that exercise brings to your brain and your body is just truly an amazing feeling and accomplishment. I can imagine some of you have not sweated since elementary school, and you do not necessarily want to exercise. Still you are in the driver’s seat when you regularly exercise. This puts your Parkinson’s in the backseat because you determine the day’s journey.
- Be mindful. It is easy to say but hard to accomplish. But if you think too hard about the past and plan too much for the future you’ll never live the present day and succeed directly. Your Parkinson’s wants you to live your life this way, trying to get past the past and forge ahead into the future without letting in the present day.
- Persistence pays off. Try your best to resist the changes that are occurring slowly in your body and your thought process. It is almost imperceptibly small— only someone who sees you very frequently might even notice these small changes. Plan on being persistent today because your Parkinson’s really cannot stand it when you are in that mindset.
- Do not forget to schedule your annual physical with your movement disorder specialist. Go there with questions and a plan and come out with the answers.
- It is easy to get burned out trying hard pitted against your Parkinson’s. Please do not get down on yourself in this matter. There a lot of people right now just like you dealing with their own version of Parkinson’s, each with varying degrees of severity. It is okay to take the day off; there is always tomorrow.
- Never lose hope. Your exuberance for being hopeful casts a pale shadow on your Parkinson’s, which diminishes both its grasp and fury on you.
- Some Lagniappe [(/ˈlænjæp/pronounced LAN-yap) a word used in south Louisiana (Cajun French), which means ‘a little something extra’]. Be resilient. At times, the condition of life with Parkinson’s will be difficult; and occasionally, it will border on really difficult. And many other times, you will feel slightly different but somewhat normal. Resilience implies you can withstand and recover from difficult conditions. Remain strong by staying resilient.
“Avoiding problems you need to face is avoiding the life you need to live.” Paulo Coelho
Stay Focused and Keep Living: Occasionally, you may encounter people who have accomplished the most incredible things. In reality, living with Parkinson’s makes you an amazing person. Most people do not realize what it is like to live with this disorder, and you do it every second, minute, hour, and so on; until we find the cure. People-with-Parkinson’s are individually doing some incredible feats each day. I congratulate you on your effort. Stay focused, healthy, strong, and balanced while you are staying yourself amid Parkinson’s.
“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” Elisabeth Kubler-Ross