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Living with Dignity and Parkinson’s Disease

dignity

Respect for oneself can often be hard to come by. We can see our mistakes and failures. We recognize the missed opportunities to become who we wanted to be, and the times we fell short of our goals. Couple the inadequacies we carry with us alongside having a chronic illness such as Parkinson’s disease, and we can begin to lose our dignity within the disability. 

Brokenness

We can feel like broken crayons or an irreplaceable piece of china that lies shattered in a pile on the floor.

The awkwardness in our walk can cause us to be self-conscious. The stuttering in our talk leaves us embarrassed and carrying around a sense of misplaced shame. Uncontrollable tremors can create discomfort when strangers’ eyes are drawn to our constant movements. We think that we give off an air of clumsiness. We feel anything and everything but dignity. Our self-respect has been replaced by insecurity and a lack of grace, leading us to withdraw from those we care about and who care about us. 

Looking inward

While others can see only what is happening on the outside, they may forget that there is still a sensitive, kind, gentle being behind that masked face. When someone relies on the assistance of an old, crudely made cane, others might believe the person to be drunk due to their swaying, unbalanced gait. 

But alcohol has no place in this life with Parkinson’s — and neither do mind-altering substances. We shuffle about and freeze in place, stumbling over our two feet as we struggle to make our way across the room. Onlookers don’t know our struggles or that we battle the Parkinson’s beast, moment to moment, day by day.

Is there any dignity in our lives?

I believe that there is dignity to be found in our determination to keep going as long as God gives us breath. There is dignity in our refusal to give up. We all fall, whether we have Parkinson’s or not. We all fail sometimes when trying to reach our goals. We can keep our dignity in this disability if we don’t allow others’ stares to increase our insecurities or our stuttering to fluster us. On the inside, we are the same person, even if the outside appears to have changed.

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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.

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I’m a Better Listener Because of Parkinson’s

listener

I’ve always liked attending different events, such as movies or concerts, or having lunch or coffee with friends. But I don’t get out to socialize much anymore. It’s not that I can’t or don’t want to. I merely am hesitant and for one reason or another usually talk myself out of it. 

You do that when you have Parkinson’s disease (PD). You feel like you’re constantly yelling because your voice is no longer heard. Skirting older people with canes and walkers while trying to balance a plate of food takes skill when balance is a struggle. And then there’s the work of trying to keep up with a conversation. Before you can organize your thoughts to respond, the people around you have changed topics 12 times. So you listen.

I committed

A couple of weeks ago, I decided to accept an invitation to dinner at the park where we live. My neighbor asked if I was attending because she needed a ride to the clubhouse, and I said yes.

The festivities started at 5 p.m., but the invitation said 4. Frustration spread among the neighbors who gathered for their free evening meal, as they were mostly over 70 and used to eating at 4 p.m. Their graciousness began to dissipate and was overtaken by grumbling and complaining.

I turned my attention to the front, where boxes of various sizes were stacked atop one another and wrapped with bright, colored paper and festive ribbons and bows. Santa and Mrs. Claus sat by the Christmas tree in the corner waiting for a photo-op with children who might come, of which none had yet.

Dinner is served

A Christmas caroler and country soloist began to tune his guitar. He readied himself for the audience to chew in rhythm to the tunes of “O Christmas Tree,” “The Little Drummer Boy,” “Hark! The Herald Angels Sing,” and more. But people gobbled their food and mumbled about not wanting to sing at the same time, so the music stopped. We were left to chatter between bites. I listened attentively to the woman next to me, as no one else seemed to be paying attention.

We were nearing the end of our meal when the country boy drew us back to singing carols. Another woman across from me sang with gusto, loud and strong. Her vibrato was much like mine, thanks to PD, and was made up of short bleats like an old, tired sheep. That’s the sound of your tremor, showing up in your vibrato. 

The evening was coming to a close, and the raffle had yet to occur. Winners were chosen (everyone but me and one other person), and attendees opened candies, cookies, and beef sticks. Then people began to leave, taking their leftovers and prizes home.

Reflecting on the night

When I arrived home, I thought about my evening. I realized that I have a greater tendency to withdraw now, for reasons that are justified or imagined. But I also realized that I am happy to listen and observe. I honestly enjoy myself.

Why am I OK to merely listen and observe? My voice doesn’t carry enough to be heard anymore. Combine that with the fact that most of my neighbors need hearing aids they forget to turn on, and I better be content with listening and observing!

I may find that PD makes me less talkative, and I may find it harder to keep up with conversations, but that’s OK with me. My neighbors often want someone who will listen, and PD enables me to be a better listener. And that’s a good thing.

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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.

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I Have Parkinson’s, but I Won’t Let It Have the Best of Me

best

I’m unsure about how I feel today, but I am certain it’s not me. I am not at my best.

Tired and weary, I am running this race against time. I hope I am running it well. We all believed, at one point or another, that we had a limitless supply of time. We couldn’t wait to grow up. And while we were daydreaming about getting older — and hopefully wiser — those who had reached adulthood wished to be young again. None of us — young or old — ever dreamt of having a sidekick called Parkinson’s disease. Some “thing” that would insist on stealing the show, taking our inexhaustible dreams and infinite wishes, leaving us exhausted and apathetic.

Dreams and wishes

During sleepless nights, I can be tired and weary. I often wonder what it would be like to be young again. The young before the young-onset Parkinson’s disease stepped into stride alongside me, somewhere during my first 30 years of life. The days when I dreamed of being all that I could be while feeling something pulling me in another direction.

Thief of time

Chronic diseases can rob us of time. They can plunder our lives and steal our hopes and dreams. They can ruin our relationships, but we aid and abet them by becoming antisocial and stepping away for unsubstantiated reasons. 

We think that we don’t speak loudly enough for others to hear us, so we take one step away. 

We are convinced others don’t want to spend time with us, so we take another step away. 

Our canes and walkers remind us that we have slowed down — and so we take yet another step away, thinking that others wouldn’t want to walk at the back of the lines with us. 

We are invited to lunch with friends but refuse the invitation, believing that we will burden others when we require help with cutting our food. 

Another step. Few become many. We now feel friendless. But are we justified in our belief? Perhaps. But from personal experience, I know that we can force those steps ourselves.

Fighting back

I can say, “I have Parkinson’s, but it doesn’t have me,” but the truth is that sometimes it really does have me.

It’s gotten a hold of my zip, my perk, and my drive. It often gives me “tired” instead. And it takes that thing we call time. 

It takes time to muster up the energy to fight back. But somehow, somewhere deep inside, I find the zip, the perk, and the drive, and I take back the “me” that was missing. I push through another day of having Parkinson’s, but I don’t let it get the best of me.

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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.

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A Word for the New Year

best

A huge part of bringing in the new year is buying a new calendar, a new journal, a copy of the book you have vowed to read, or a working scale — one that tips in your favor and not against it when counting those unwanted pounds.

The first days of a new year are filled with good intentions, great ideas, and go-get-’em goals. We tend to get excited about changing things, only to disappoint ourselves by not meeting those well-intentioned goals. 

I think keeping resolutions is more difficult for a person with a chronic disease. Each day is so unpredictable. When you open your eyes in the morning, you aren’t sure whether today will be harder, the same, or better than yesterday. Some days envelop all three states of mind.

It’s easier to keep one resolution than 101. While you may feel ambitious, one resolution is more realistic.

Failure

For a person with a Type A personality, making a list of resolutions is natural. But having Parkinson’s disease and being a Type A personality may be a recipe for failure. We want to make our list and check it off twice. We want all our ducks in a row when New Year’s Day rolls around so we can start out a champion. But by Day Four, we are tearing up our list and giving up — the ritual of years gone by.

One word

Several years ago, I heard about someone who chose one word that encapsulated the essence of what they wanted to change in their life instead of making resolutions. Not an easy word like “loving” — something more specific, more individualistic. Something like patience, forgiveness, or perseverance.

How often do we feel like giving up? What we need at that moment is the persistence and determination to keep moving forward. Perseverance.

Patience

And how often do we become impatient with our caregivers, or our caregivers with us? We often hear that patience is a virtue. It is a quality for which we should want to strive. We should practice patience whenever and however we are able. “To strive for the ability to accept trouble or suffering without getting angry or upset,” as Webster’s dictionary says. I would alter that by changing “getting angry or upset” to “staying angry or upset.” Patience can be endurance in a difficult situation, or showing self-restraint toward someone who is driving you crazy.

Forgiveness

We should also strive to practice forgiveness. Pardon others for the wrong they have done. Not because they deserve it, but because it is good for our health. It is healing. It promotes healthier relationships, improves mental health, creates less stress, lowers blood pressure, creates fewer  symptoms of depression, improves heart health and self-esteem, and builds a stronger immune system. With those advantages, who wouldn’t want to forgive?

Maybe in 2020 we should nix the list and find that one quality — that one word — to concentrate on for the year. Instead of making a list of 101 things we want to change but won’t, let’s choose one and accomplish much despite having Parkinson’s disease.

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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.

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Could It Be the Pseudobulbar Affect or Am I Just Happy?

pseudobulbar affect

I was playing a nice, calm game of Hearts with my kids and grandkids when I started laughing. Again. My outburst was not out of the ordinary, unless somewhat irrepressible mirth counts as abnormal.

I’ve experienced several bouts of uncontrollable laughter in the last few months. I have noticed that it happens during my exercise class, when I’m with family, and at other times. People usually think that I am up to something. But I am not, I just can’t help smiling.

The pseudo … what?

The pseudobulbar affect (PBA) is a condition sometimes seen in people with Parkinson’s disease. It is distinguished by a loss of control when it comes to laughing or crying. One moment the person with PBA is sitting with you, having a normal conversation, and the next, they are laughing or crying uncontrollably. At least that’s how I would imagine it would play out. Their outbursts don’t correspond to the emotions they are displaying; for example, laughing when they’re grieving, or crying when they’re telling a joke.   

So, does smiling count when it comes to the pseudobulbar affect? I don’t usually indulge in self-diagnosis, and I’m not looking to entertain another disorder. However, I find this condition to be fascinating. 

With Parkinson’s disease, we are often battling a “stone face” and trying to find our lost smiles. I have experienced both ends of the smile spectrum. I have had people admonish me, telling me to smile, when I am having a perfectly super day, but my smile — or lack thereof — seems to suggest otherwise. Equally, I have received several compliments from people saying that I have a beautiful smile. 

What to do?

I have learned while attending physical therapy to do everything BIG and intentionally — as I wrote in my column, “I’ve Made BIG Improvements with Parkinson’s Therapy Program.” I believe that smiling is just as important as good balance. Your smile is often your calling card in life.

I don’t believe that I have PBA — but who knows? Perhaps it is the beginning of this strange condition, but I don’t think so. I smile because I am happy and filled with unspeakable joy. And I don’t intend to wipe that feeling off my face anytime soon.

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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.

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Things Lost and Things Gained

Have you ever heard someone say that having Parkinson’s can be blamed for much and many a thing? I have. And why not blame our woes on this disease? It’s taken much and many a thing from us. Things we, at one time in our lives, had full control over. Things about which we had some say. 

Parkinson’s disease (and other various diseases some people don’t know ‘what to do with’) can be blamed for from the loss of things physical, to the loss of things emotional. For troubles encountered in the financial realm, to the loss of things we must struggle with in the mental. It can be responsible for the loss of relationships, to the loss of joy and happiness we once cherished and held dear.

Things lost.

Broken marriages.

Irritability.

Pain and fears without names.

Can this disease also be blamed for the loneliness you feel, standing deep within a crowd? Are we able to blame tears we cannot control or screaming we cannot contain on something we cannot see – this thing we call a ‘disease’? I say – yes.

In its clutches we can feel as if we are being tossed about within and then turned from the  inside to out.

It often seems as if all we do is done the wrong way. The masked look on our face is constantly being misunderstood. There are things we can’t say and there are things we cannot do. We would if we could but no more are they ours to accomplish on our own. 

Our legs won’t get us where we want or need to go – fast or safe enough. Our fingers will not move our pen across pages we yearn to fill.

Can we really blame Parkinson’s for all that garbage and pain? I’d like to believe that’s a choice we do have, to blame it all on a disease that steals and destroys, leaving us powerless and literally, without much of a voice of our own.

I don’t know why a select group – a band of brave warriors and/or a flock of faithful friends – have been chosen to ‘endure for a cure’. I do know that it is only by sticking together that we will make it through.

In the gamut of things gained, we step back and wonder, what is it that we have reaped through pain and suffering, if anything?

Things gained

‘Pay it forward’ was a common phrase a while back, the idea being if someone did something kind for you, you would hopefully pay the kindness forward to someone else. Think about that in the realm of Parkinson’s disease and things gained. 

In no way do I mean pay pain and suffering toward someone else! Instead, pay forward what we have learned from this disease. The encouragement, the wisdom, and the knowledge that we can offer to others. Those who are not as far along as we.

It is a kindness we all can share and share in, in spite of what we have lost. 

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My Favorite Holiday Gift Ideas for Your Loved Ones with Parkinson’s

Christmas gift ideas

Every year, I compile a list of holiday gift ideas for people with Parkinson’s disease. This year, I’ve taken my favorites from previous lists and added some new ideas. I’m offering them here for those who need assistance with finding the right gift for their loved one.

A few of my favorites

Two of my all-time favorites are a terry cloth bathrobe and an electric toothbrush. The robe can be worn after showering when we don’t have the strength to dry ourselves or struggle with balance. A task like brushing our teeth doesn’t have to be so difficult when we have a quality battery-powered toothbrush.

Years ago, I bought a herbal neck wrap. I heat it in the microwave and use it to relieve stiffness in my neck. I also lay it across my feet to warm them up. These wraps are super easy to make: Use corn or rice and mix in aromatic herbs such as lavender.

For the love of books

If your loved one enjoys reading, a Kindle or another e-reader could be the answer to your gift-giving question. Fine motor skills — such as turning pages — can be challenging for some people with Parkinson’s. And a touch screen could be the solution. You could add a gift certificate to cover their first book purchase.

Personal care tasks, such as taking care of nails, become more difficult as the disease progresses. Your loved one might be delighted with a voucher for a professional manicure. A basic treatment is not overly pricey and often includes a hand massage. You could splurge and add a pedicure to make them feel truly pampered.

An alternative to a professional manicure is a do-it-yourself nail painting that an older grandchild could give to a grandparent. People with Parkinson’s might be grateful for an electric manicure set if they can still take care of their nails.

Let’s admit it: Some tasks would be easier with help, but you’d like to maintain your modesty a little longer. Have you considered a bidet toilet attachment? I discovered this device a few months ago and thought, “Why not?”

Following are more gift ideas that may inspire you this holiday season:

  • Slipper socks with nonslip soles to prevent falls;
  • Gift certificates for dance, voice, or other Parkinson’s-specific classes;
  • A Rock Steady Boxing membership;
  • Weighted eating utensils;
  • Book of puzzles or brain teasers;
  • Colored pencils and adult coloring books.

Whatever you decide to give your person with Parkinson’s, if the gift is chosen with love, they will appreciate it.

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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.

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Feeling Alone with Parkinson’s Disease

alone

We’ve all been alone. We’ve all felt alone. And we all know there is a difference between the two.

Being alone is having no one around to laugh with, to cry with, or to be with us when we need them. Feeling alone can happen in a coliseum, surrounded by thousands of people.

When we feel alone, it is hard to pull ourselves out of the pit. We withdraw and separate ourselves from others. Feeling alone lends itself to isolation.

With Parkinson’s disease, it is easy to sink into loneliness. We convince ourselves that no one wants to spend time with us because they don’t understand us or what we’re going through. That’s not always true. Sometimes it can be that another’s perception of what is going on with us is different than what is really happening. But we are convinced that they don’t understand our plight in life.

Let’s say they don’t understand.

Others can’t see when we shake on the inside. And when we shake on the outside, they only see half of it. We don’t always think clearly or speak loudly enough to be heard or understood. Newly impaired vision may prevent us from seeing what they do. That frustrates them. They don’t know when the pain becomes unbearable.

It they can’t see what is affecting us, how can we expect them to understand?

It is up to us to educate others about this disease. We have to help them understand that we aren’t the same as we once were. Few people are, but Parkinson’s can accelerate that reality. It changes us emotionally and mentally, as well as physically. We can’t do things as quickly as we once did. We can’t do some things at all anymore. Like writing. Or jogging around the park with a friend. Or eating without needing someone to cut up our food. Parkinson’s affects our ability to finish sentences and keep up with conversations.

It is up to us to tell others how we are being affected by this disease. If we don’t, who will? We can’t expect others to understand unless we intentionally begin sharing. And if they still can’t — or won’t — understand, we’ve done all we can do.

We must move forward, knowing that we are in this together. We are never alone.

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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.

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I’ve Made BIG Improvements with Parkinson’s Therapy Program

BIG

I have been seeing a physical therapist four times a week for the last month. I hadn’t injured myself, though I experience aches and pains with Parkinson’s disease.

My neurologist referred me to a physical therapist who teaches the BIG program. The LSVT BIG program is designed for people with Parkinson’s to bring their movements to a more “normal” state, as they tend to become slower and smaller over time.

My first session

My first appointment consisted of small “tests,” like those performed during a Parkinson’s diagnostic exam but less extensive. The therapist examines and times your walking and tests your balance, among other abilities.

BIG is customized for people with Parkinson’s. Perhaps you struggle with getting out of bed. Though this specific activity isn’t included in the standard routine of the BIG program, it can be worked into your tailored activities. The therapy can help you no matter what stage of the disease you are at and it’s recommended that you start treatment as early as possible.

What improved?

The BIG treatment improved my walking in general, and I gained confidence with “stair-stepping.” I no longer take each stair sideways, with extreme caution, and slower than molasses. The program helped me to be more intentional in my activities and how I carry them out.

At my therapy sessions, we started with the exercises that are specific to the BIG program. I completed two exercises while sitting in a chair, stretching down, up, and back, and ending with a “BIG” finish. The rest of the exercises — except for the last — are performed while standing and are aimed at balance and coordination, and also end with a “BIG” finish. The program strives to teach the person with Parkinson’s to emulate the bigger movements of those around them who walk and interact “normally.”

After the “regular” exercises, we practiced tasks tailored to my needs. These included cutting up food, buttoning/unbuttoning and zipping/unzipping my coat or sweater, and other tasks. After those exercises, we walked around the neighborhood for a half-hour, practicing arm swings and balance.

Was it worth it?

My sessions are over, and as my movements have improved, my outlook has, too. While the exercises are not difficult to do, they must be practiced daily for continuous improvement. I noticed that if I skipped even one day, it made a difference to my ease of movement. I realize that if I want to live BIG, I need to exercise BIG, and that means I must think BIG.

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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.

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I’m Learning that Life Doesn’t Always Need to Be Lived ‘My Way’

my way, courage

I saw a musical movie with my daughter a while back. We were the only people in the theater and we had a great time. The only problem is that these types of movies awaken my repressed desire to sing and dance, much to my family’s despair. 

I left the theater singing, adding a few little dance moves to the words I could remember (which were few) in my song of choice. (Yes, the attendant behind the snack bar delighted in laughing at me.)

Pain in pleasure

And then, in one of my graceful moves, I threw out my back. The pain seared through the entire middle section. Fortunately, it didn’t last too long.

What was unfortunate, however, was coming face to face with Parkinson’s disease once again. I know that no matter what my heart desires, this thieving disease will determine whether I can do what I’d like to do. Ultimately, it isn’t my decision to make. Not really, anyhow.

My way would be a different way

If I had my way, I’d join a dance class and learn to waltz.

If I had my way, I’d go skiing just one more time.

If I had my way, I’d play softball and hit a home run.

If I had my way, I’d put on my own socks and shoes.

If I had my way, I’d insist that I can do it all myself.

If I had my way, I’d do many things I once could do but can no longer do.

But today is different

I can’t have my way. Parkinson’s has seen to that.

I’ve had to learn to receive and accept that I am not always able to give.

I’ve had to learn that dancing will have to wait, at least for right now.

I’ve had to learn that skiing is not for me anymore.

I’ve had to learn that others are able and willing to do what I cannot.

I’ve learned, unlike Frank Sinatra, that I don’t always have to have it — or do it — my way.

And I’m learning … that’s all OK.

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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.

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