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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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Courage in the Face of Fear

my way, courage

We all fear something. Some of us fear death. Some of us fear being left alone. Others have a fear of failure. This journey we are on can be full of treks through deep, dark forests, roads full of potholes, and mountains we must climb.

When I hear the word fear, I almost always think of Psalm 23. It is one of the Bible verses kids learn early on in Sunday school. It talks about not fearing what might come: “Yea, though I walk through the valley of the shadow of death,” I will not fear.

The shadow of death

What is “walking through the valley of the shadow of death?” I think the shadow of death is anything that casts darkness over our lives. Surgeries, chronic diseases, and heart problems can fall under the shadow of death. The list could also include a dying marriage or a wayward child. Walking in a dark valley can bring a fear to fruition, leaving us to experience undue anxiety, an agitated spirit, and feelings of desperation.

Parkinson’s disease has a way of causing us to fear. But there is a way to deflect it.

When fear immobilizes us, faith can overcome that fear and give us much-needed courage. Faith speaks to our hearts, telling us a better day is coming. Faith walks with us through the valleys, shining a light ahead so our hope does not fail. It keeps us walking when we feel like collapsing and giving up.

Hope

Fear loses its power when we take a deep breath of courage and keep moving forward, refusing to give in. Courage can stand and fight when fear breathes down its neck. Courage faces diseases and refuses to stand down.

Courage refuses to give up. Courage is a state of mind that embraces the here and now and holds out for hope. I have seen people with Parkinson’s disease embrace it with both hands, determined to make the best of it. Do they have a secret that allows them immunity over the fear of Parkinson’s or any other illness? 

No. Instead, they have chosen to ax the fear and live courageously with unrelenting hope. A hope that speaks to their spirit and gives them courage as they choose to believe that change is coming. A hope that says change is possible.

Take heart

When the fear ogre comes to tamper with your courage, know that you have a band of comrades standing (or sitting) with you on the front lines. They are ready to do battle on your behalf.

You may feel as if the load you carry is unbearable. You may wonder whether you will make it another day with the pain and stiffness, the immobility, and more. Embrace the courage within you — no matter how small it may seem — and grab hold of the hope it offers. And don’t let go.

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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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Staying Strong Despite Our Parkinson’s Challenges

courage

This column is about strength and how we endure despite our challenges with Parkinson’s.

As politician and actor Arnold Schwarzenegger once said, “Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.”

We often feel weak and tired. Our bodies can’t move in the ways they once could. We can’t exert ourselves the way we used to. Though physically we may feel that we are losing ground with Parkinson’s disease, we persevere, putting one foot in front of the other as we keep moving forward.  

Our abilities are stronger than our disabilities

When we have Parkinson’s disease, we are considered disabled. Our movements, our senses, and our abilities to engage in the activities we once enjoyed may be limited or impaired. We can feel that we are powerless against a force that seeks to destroy us.

However, we are strong despite this disease. Though our physical strength might wane, we summon our mental and emotional resources to push onward. We are resilient and unrelenting in our determination to win our battle with this disease.

I believe that people with a chronic disease such as Parkinson’s often have a greater tendency than others to exhibit a positive attitude. We have been forced to face our mortality, and as a consequence, we can be more open and see clearly the daily blessings bestowed upon us.

A positive attitude brings life into a room

Negativity is replaced with optimism and laughter. Having a positive attitude is a sign of strength of character. When things are on the downturn, we are looking for a way up and out. A positive attitude is a frame of mind that says “I can” instead of “I can’t.” We believe that “it’s possible” rather than “impossible.”

Strong people are grateful despite their circumstances and know how to encourage others because of what they have been through. They continue on their journey, bringing hope to others and light to the dark places.

Do you shine light into the lives of others? I hope that I do. 

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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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Finding Joy in Giving Thanks

joy

How can we experience real joy when we struggle to be thankful? Dealing with difficult circumstances, particularly when living with a chronic illness such as Parkinson’s disease, can lead us to have a grim outlook on life. We can become embittered when things don’t go as we’d expected or wanted.

What do we expect? Do we think that things will never go wrong because we try to do everything right? Do we expect a situation to go our way because we feel that we are undeserving of bad things?

Learn to be content

Discontentment can stem from a lack of peace and grow due to continual worry about the things over which we have no control. Discontentment can arise from hopes being dashed or unrealized expectations of what we thought our lives would be. Simply put, discontentment is void of joy.

Serenity is the opposite of discontentment. It is a state of calm and peace. Discontentment cannot coexist with serenity. Serenity is grounded in a trust that is bigger than ourselves and goes beyond our understanding. We welcome such trust instead of succumbing to worry about every little thing that ultimately leads to our unhappiness.

A lesson from the birds

Birds don’t worry about where their next meal is coming from. They know that they can always find food. They don’t spend their time in a state of worry, and their songs reflect their lifestyle.

The key to being content, a foundational component to joy, is: Do not worry.

The Serenity Prayer, thought to have been written by the American theologian Reinhold Niebuhr, is widely known and used by support groups and addiction recovery 12-step programs. We would do well to heed its wisdom when it comes to practicing contentment: “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.”

Develop an attitude of gratitude

With Thanksgiving almost a week away, our thoughts turn to moments of gratefulness. Now would be a good time to start a Thanksgiving list. When we take time to reflect on the good things that happened in our day and the lessons we learned from the not-so-good things, being grateful will come more naturally and frequently.

When we count our blessings and start a habit of reflecting on the things for which we can be thankful, our outlook and attitude will begin to change. We will find more to be thankful for, and our state of thankfulness will encourage joy to flourish.

The magic of music

When we are striving for joy — and not merely happiness, which can be fleeting — music can be a bridge to get there. A singing or whistling person is rarely a discontented one. Music can help to instill peace, hope, lightheartedness, and a light at the end of the tunnel. Where peace and hope exist, healing music and joy are found. 

Joy overrules discontentment any day. But that doesn’t mean sorrow or grief won’t come our way. We will get through the darkest days, undefeated, and ready to overcome our challenges with a heart filled with thankfulness and joy.

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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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Hiding Behind Parkinson’s Disease

shame

We often try to hide from the world when we feel inadequate, abnormal, or different. It’s a natural defense that can be destructive when it leads to feelings of shame.

Shame is an emotion we would rather avoid. It can come upon us unexpectedly. We tend to associate it with feelings of inadequacy or a poor self-image.

Odd but true

It might seem odd to think a disease would cause you to feel shame. With Parkinson’s disease, our bodies change as they become more rigid. They become more difficult for us to manage and we must rely on help from others. The lack of independence can be humiliating and lead to feelings of shame.

Negative feelings about our appearance or our capabilities affect our expectations. When shame is present, we fear being judged harshly. You feel as if you have breached an unspoken code of conduct for what others view as acceptable behavior in public.

We put pressure on ourselves by believing you have to walk a certain way, talk a certain way, and move a certain way to be normal. For someone with Parkinson’s disease, it might be impossible to live up to the code. It is easy to fall into the trap of feeling worthless and as if we have nothing to offer just because we have Parkinson’s. We can feel small and unimportant, and we may want to disappear.

I was talking to a neighbor one day and my hand began to shake quite a bit. She asked, “What’s the matter with you? Am I making you that nervous?” The way she asked was embarrassing for me. But that was the day she found out I had Parkinson’s disease.

Take off the mask

We want to hide because of how our disease makes us feel. Others want to hide from us because of how our abnormalities make them feel. It is uncomfortable for both sides. People don’t always know how to approach someone with Parkinson’s disease. They don’t know what to say or how to respond.

Don’t be embarrassed the next time you find yourself in a situation where someone is uncomfortable because of how you walk or talk. Enlighten them about the disease. Take off the mask of fear and shame and let others see you. There’s no reason for you to be ashamed.

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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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Can You Be a Rainmaker and Bring Hope to Dry Places?

rainmaker

You may have encountered the term “rainmaker” used in the nonliteral sense. Lindsay McPhail, editorial director of The Wild Woman Magazine, describes a rainmaker as “someone who brings hope to dry and barren places. Someone brave enough to get face to face with her own darkness and vulnerable enough to tell her story.” 

Sharing our stories might be the most healing thing that we can do for someone else. As the saying goes, “Misery loves company.” It’s true. But misery wants company that will help in a constructive, health-giving way. 

If we sit down to start sharing our woes with someone who desperately needs hope, we might make their problems worse. But if we tell our story in a way that encourages the other person, and makes them feel understood, supported, and watered in their barren places while shedding light on their darkness, we might help them to stand on their own two feet and move forward feeling restored.

But how do you encourage others with Parkinson’s disease when you need reassurance yourself? How can you feel understood in your experience of this disease when no one seems to be listening? 

When you need light, you may believe that the darkness will never dissipate. When you crave water, you feel as if you’ll never escape the dry, barren desert. Hope can seem unobtainable.

But hope exists, even if it seems remote. It comes in the guise of courage that refuses to quit. You show up to exercise, and hope appears in the form of perseverance and endurance. Hope shines through as determination and strength of character. It pushes forward even when you feel pulled back. It takes one day, one hour, one minute at a time, because you know that — deep down inside — hope exists, or you would have thrown in the towel long ago.

Hope enables you to stand on your own two feet. As a rainmaker, you share your story to help another person out of their darkness and into the light. You have shared hope and, thus, the gift of life.

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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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Here’s a Primer on Common Parkinson’s Terms and Abbreviations

When you are new to something, it’s common to feel disconnected or out of place — especially when it comes to understanding the language. At church, newcomers may hear words that don’t make any sense. “Churchy” people (including me) tend to throw around big words.

It also occurs with abbreviations. I’ve seen it happen in the Parkinson’s community. It isn’t intentional, but it happens. Someone might read a post with the abbreviation “PWP” and ask, “What is PWP?” Some might even add an apology of sorts: “Sorry, I’m not very smart.”

Big words

Following is a list of common words and definitions that may be unfamiliar to a Parkinson’s newbie:

  • Akinesia: Inability to move spontaneously; loss of voluntary movement.
  • Ataxia: Impaired balance, coordination, and muscle control.
  • Bradykinesia: Slowed movement.
  • Carbidopa-levodopa: Medication used to relieve Parkinson’s disease symptoms.
  • Dopamine: Acts as one of the brain’s messengers to signal movement and maintain balance and coordination.
  • Rigidity: Muscle stiffness and resistance to movement.
  • Postural instability: A term with big words referring to balance issues.
  • Dyskinesia: Abnormal, involuntary movements.
  • Micrographia: Small, cramped, often illegible handwriting.
  • Facial masking: Facial muscles become immobilized, giving the patient a mask-like expression.

Did you know all those words and their meanings when Parkinson’s first arrived at your door? I know I felt out of place when someone would use “dyskinesia” to describe actor Michael J. Fox’s symptoms. It can be awkward when you don’t know.

Abbreviations

The same is true when we throw around abbreviations such as:

  • DBS: Deep brain stimulation.
  • PD: Parkinson’s disease.
  • MDS: Movement disorder specialist, a neurologist who has training specific to Parkinson’s and other movement disorders.
  • PWP: Person (or people) with Parkinson’s disease.

Those may seem second nature to us, but not to someone who was just diagnosed.

The same holds true for the Michael J. Fox Foundation (MJFF), American Parkinson Disease Association (APDA), Parkinson’s Foundation (PF), and more. We tend to abbreviate them, forgetting that the majority of people don’t know what Parkinson’s disease is, let alone the abbreviations of its foundational and organizational names.

Keep it simple

We don’t need to dumb things down, we just need to keep them simple. Starting with the PWP who might be considering DBS as suggested by an MDS and are searching for information from the MJFF to help them understand.

That’s all.

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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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My Caregiving Bucket List

bucket list

Sometimes I wonder what my life with Parkinson’s disease will be like in the coming years. I also think about the challenges that my caregiver will face. It’s hard to avoid thinking about the future when you live with a chronic disease.

Sitting outside on my porch this summer, I watched the birds flying back and forth as they collected sunflower seeds from the feeders I had put out for them. As I write this column, I think about the time when I might not have the energy or the ability to feed them. I’ve asked my husband, when that time comes, to please take me onto the porch so that I can still enjoy watching the birds. 

When you live with a chronic illness, you inevitably find yourself thinking about the “what ifs.”

We believe that we know another person well, but does our caregiver appreciate the little things about us that might make their job of caregiving easier?

For example, does my husband know how much I enjoy the birds? Of course, he does, but in the throes of caring for me, he may forget about wheeling me onto the porch to listen to their chirping. A caregiver may be too distracted with essential tasks such as medication dosages and appointment schedules to remember the little things.

Create a bucket list

Why not make it easier for my “future caregiver” now? I’ve begun to create a bucket list of my “likes.” This list includes activities I enjoy that my caregiver might not think of, but that could make their job a little easier by keeping me “occupied.”

The following are my suggestions based on my own caregiver bucket list:

  • Make a list of my favorite books and authors. It doesn’t matter if I’ve already read them. By the time I’m in that place, I will have forgotten what I’ve read, and they will seem like new stories. If you are unable to read anymore, perhaps you would like your grandchild or another family member to read aloud to you? It would benefit the younger person and give your caregiver a break. Audiobooks are another option.
  • Bird-watching is something a person can do while sitting in a chair unattended. For rainy, bird-less days, a CD of birdsong for the patient to listen to indoors might be soothing. 
  • Make a list of my favorite movies and actors for future reference.
  • People with chronic illnesses often experience pain that can be alleviated through touch, for example, with a foot rub or application of lotion or oil to the legs. Gentle massage helps to relieve stiffness and aches while making the patient feel that they are cared for and have value.
  • Who hasn’t enjoyed a quality haircut? One reason is that you get a scalp massage. However, a caregiver might have arthritis and be unable to give a scalp massage due to stiff fingers. As a little girl on family car rides — before car seats for kids or mandatory seat belts existed — I would often stand on the floor behind the driver’s seat and “do” my dad’s hair as he drove. I would comb it and pin barrettes and bobby pins. He’s now 85, but he still talks about how he loved when I’d mess with his hair — not because he liked pink barrettes and ponytail holders, but because it felt good. Maybe you have a little granddaughter who wants to practice being a beautician?

Talk to a person who cares for someone with Parkinson’s or a fellow patient who is further along in the disease than you are and ask for their suggestions.

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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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Are You Wearing Spandex or a Potato Sack?

spandex

“You don’t look like you have Parkinson’s disease.” It’s a common refrain heard by those in our community. Everyone’s perception of this disease is different. And everyone wears Parkinson’s differently.

Recently, a graphic circulated among the Parkinson’s disease (PD) community showing the visible and invisible symptoms associated with the disease. Those who don’t look like they have Parkinson’s likely struggle more with invisible symptoms.

Outward symptoms of Parkinson’s disease

Visible signs of PD include rigidity of the muscles, dystonia, and tremors. These can be seen in the extremities, as well as the jaw, lips, and other parts of the body. Akinesia, bradykinesia, balancing issues, and even handwriting fit this category.

Visible signs stick out like a sore thumb. It’s like wearing a tight, ill-fitting, neon orange, one-piece spandex exercise outfit. Every curve is accentuated in an unattractive way.

Every bulge sticks out, drawing stares and whispers.

Internal symptoms of Parkinson’s disease

Hidden symptoms make diagnosing PD more difficult; minimal visible symptoms can mimic other diseases.

It’s like wearing a potato sack: You can’t tell what is underneath. But invisible symptoms are often greater in number than those that can be seen.

Insomnia and others sleep issues are common. Depression, panic attacks, apathy, hallucinations, dementia, and anxiety are often taboo subjects that need to be addressed. Patients struggle with swallowing difficulties, aspirating, speech problems, and gastric reflux. They don’t talk about the bladder and erectile dysfunction — or the constipation.

What’s wrong with your face?

A lack of facial expression (known as masking, or stone face, among the PD community) may come into play. And a loss of smell may come as a surprise, but it can have its benefits.

Pain should never be ignored as a potential symptom of Parkinson’s disease. While it may not be associated with your individual PD outfit, it is part of the potato-sack cover-up.

Whether an outfit is made of spandex or a potato sack, the symptoms are real. They can be devastating and overwhelming.

We need to remember that no matter what our symptoms look like, we are not alone. We are on this journey 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 Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

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