Our Parkinson’s Journeys May Be Different, but You Are Not Alone

Every Parkinson’s disease patient has their own way of dealing with their diagnosis.

Sometimes we accept it immediately. After all, we may have had a nagging idea that something wasn’t quite right with our bodies, after living with the symptoms for a while.

Some of us may recall the day of our diagnosis. Maybe it felt like a burdensome weight was finally lifted off our shoulders. We finally could put a name to the face, so to speak.

The art of denial

Sometimes acceptance doesn’t come so easily, and we find ourselves in denial. We choose to ignore the truth. We choose to ignore the facts staring us right in the face.

If something is too difficult to handle or cope with, we might simply deny it. We can push it down or we push it away. We’ll simply pretend it isn’t there, and that way, we won’t have to deal with it, at least not right away.

Help!

Though we may subconsciously choose to be oblivious to our diagnosis, we’re left with symptoms we can’t explain away or ignore. They follow us around night and day, begging for our attention. Eventually, we give in to them. We finally come to a point where we realize that our symptoms are not going anywhere anytime soon, and we need help.

When we realize our life is going in a different direction than we had once dreamed about, we become aware that things will be a bit different, because now we have Parkinson’s.

Our days will not necessarily be our own anymore. Some of us are now devoted to taking handfuls of medications three, five, maybe even seven times a day, while others — not so much. We may have started walking, stretching, boxing, cycling, or participating in other types of exercise that we once turned up our noses at.

Perhaps our days consist of new hobbies because we can no longer do the old ones. We might read more or watch more TV because we are too tired to move. Maybe we are too afraid to maneuver our bodies by ourselves, and because we need help, we choose to stay home, and we stay there alone.

Why?

Why do some of us move forward with our illness while others get stuck on the words “You have Parkinson’s”? Why do some of us hide in our homes, afraid of what might happen if we go out, while others appear not to have a care in the world? Why can’t others accept our “No-thank-you’s” when we’re invited out into the frightening world where our fears — having a panic attack, soiling our underpants, choking on a meal or even a drink of water — may be realized? Why do some of us have excruciating pain that holds us back, while others have little to none?

I read a comment on a forum last week. The person listed all the things her friend with Parkinson’s was able to do: play ice hockey, skate, attend a senior fitness class, and a jillion other things. That is pretty remarkable. But some of us are unable to do so much. Some of us feel looked down upon because we are unable to do what another person with Parkinson’s is able to do. We are called lazy. We are accused of pretending to have Parkinson’s. People sigh near the checkout counters in grocery stores because we aren’t fast enough.

You are not alone

We are fighting a fight most know nothing about, can’t relate to, and can’t see. I will reiterate again what I have said so many times here and on my blog: You are not alone. We are here to share our experiences and stories as we encourage and support one another. You may not be able to ice skate, climb a mountain, or swim the English Channel, but don’t give up, and try not to be discouraged. We are in this together. 

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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, and are intended to spark discussion about issues pertaining to Parkinson’s disease.