Enjoying the Journey Despite Parkinson’s Disease
I recently received an email from someone concerned that he may have early signs of Parkinson’s disease. I have met others who have PD, but not someone in the throes of wondering if the symptoms he is are experiencing are, in fact, PD.
I can’t stop thinking about him. I think it’s because it takes me back to my diagnosis, to my days of wondering what was going on. I can relate and understand all too well.
He is scared, wondering if he does have PD. I can look back and see myself where he is now — scared, uncertain, and desperate. I can see now that, although the future is still uncertain, I have been blessed with a wonderful doctor and the support of friends and family, and I’ve been given the opportunity to encourage others. I couldn’t see those things then; all I had was the fear that my future was being taken away and a sense of hopelessness was left in its place.
Isn’t the future uncertain for everyone, whether we have been diagnosed with a disease or not? No one knows how the end will turn out or when we will tuck our babies into bed at night for the last time.
I am reminded of one of my favorite quotes: “Dance as if no one is watching, sing as if no one is listening, and live every day as if it were your last.”
That is how I want to live each day — whether I am fighting PD or making peace with it. I want to dance without caution, even if I stumble. I want to sing at the top of my lungs, even if others think I’m whispering. And I want live each day as if it is my last, even if I get a tomorrow.
It is a difficult thing to live like that. There are so many distractions and reminders that we are not “whole.” Distractions push their way into our daily paths and our bodies struggle to be free from this disease. We can, however, choose to have the attitude of living life to its fullest and enjoying the journey. It may not be the journey we would have chosen for ourselves, but there is good in it. It’s always better to wear a face of hope than one of despair.
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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.
About the Author
Marilyn
You are, indeed, fortunate to have a good doctor. Those of us who live in areas where doctors have no in-depth knowledge or experience with PD, and no support groups or activity centers, are left to flounder around on our own trying to create our own treatment plan. It just makes dealing with this disease that much more difficult.
Sharron
Thank you for your article.That is where I am at the moment--in the throes of waiting for a diagnoses and wondering if my 'self-diagnosis' had hit the mark.
A couple of years ago, I was looking for answers to why I scream and yell in my sleep when I first read about the connection between REM sleep disorder and PD, MSA and DLB, but I brushed aside the possibility of such serious disease. I felt fine. Things have progressed since then and I have been forced to confront the inevitable; although, I still have no 'official' diagnosis. I am developing more and more characteristic symptoms as time goes on, and I have read numerous articles in reputable medical journals and websites.
When I see a neurologist for the first time in a couple of months I suspect that he will suggest that I have 'possible' MSA, or maybe even 'probable' MSA. That is, if he has even heard of MSA. I'm not particularly scared, although I have my moments such as when my pulse dropped below 40 and my blood pressure shot up to heaven-knows-where. That was scary. Up until then I had kept my concerns from my family and it was a lonely journey. Now that I have told my husband what I have discovered and that I have a referral to a neurologist, we are facing the future together and that feels a lot less lonely.
Sherri Woodbridge
Sharon - thanks for sharing your story and it is nice to hear your journey is not as rough as it was. Good luck with your neurologist and don’t be timid in asking questions and sharing your concerns!
Army veteran.
I say it’s different if you are working age, and the man who is responsible for financing your family’s (including your own school age kids, not grandkids) daily bread and roof over their heads. And, after one has worked all day to provide, oh, but now there’s no time for rest or quality time with those kids. No, Dad has to go out and spend the evening working his new part time job exercising or taking therapy so he can live longer to go to work more and keep making his paycheck. He is a new “slave” to never ending work just to stay able to make the living. What a great life to celebrate, eh? His family would be better off if he just gave up and died sooner and let the life insurance pay off for his family. Mom can marry a new “Dad.”
Army Veteran PD
I say it’s different if you are younger, and a Dad, and still expected to be working to provide for your own school age kids (not some grandkids that are not your responsibility) and after working all day to provide, you find no, there’s no resting for you now, or quality time with the kids, because Dad now has to start his new “part time” evening job, exercising and therapy, so he won’t die quickly and be unable to keep “providing.” He is, since diagnosis, a new “slave” to this disease, always working and working-out, for the rest of his days, to keep living so he can keep providing. Not much of a life to “enjoy” is it? He’d be better off giving in and dying sooner rather than later, letting the life insurance pay off for his family’s future, rather than whittling down his estate with medical bills. After all, Mom can just marry a new “Dad.”