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Is Parkinson’s Disease a Bully?

bully

Sherri Journeying Through

We have all heard of them, and many of us, in one way or another, have encountered them. Some of us (hopefully, with regret) have been one. Who am I talking about? 

Bullies

They intimidate us and physically hurt us. They embarrass us, taunting us with their words. We fear that they’ll defeat us.

What do bullies have to do with Parkinson’s disease?

Parkinson’s is a bully with a capital “B.” It teases and taunts us, telling us that we are no longer useful. It tries to convince us that we no longer serve any purpose. This disease can tempt us to give up, to surrender to its cruel clutches. 

Embarrassment is one way Parkinson’s tries to steal our dignity and pride. And it often wins. We forget as we struggle through each day that others don’t understand us: our movements, speech, and forgetfulness. We can take those misunderstandings personally.

Drooling, shaking, a quiet voice, and a masked face are symptoms that may have become “natural” to those of us with the disease. But no matter how “natural” these have become, we’re still embarrassed by them because of others’ reactions when we’re out in public.

Parkinson’s whispers its ugly lies, saying you are no longer of value

If anything, you have more value. You have developed an empathy that many others don’t possess. You can relate better to those who are battling other diseases, those who are in pain, feel alone, and need hope. People who are fearful receive your undivided attention. Of course, having this disease may not be your preferred method of acquiring such character traits.

In a recent documentary video on Facebook, television host and producer Mike Rowe said, “To feel bullied is to feel helpless.” While Parkinson’s disease is a bully with a capital “B,” we don’t need to feel helpless. Instead, we should feel hopeful. Why? We are becoming better and strong enough so we don’t allow Parkinson’s taunting to get the best of us. And for me, that’s a huge plus.

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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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Caregivers Need Attention, Too

caregivers

Sherri Journeying Through

Living with a chronic illness can create stress, anxiety, and more. This is not only true for those with an illness, but also their caregivers — perhaps even more so. It is often up to caregivers to care for themselves, along with their loved ones who can no longer adequately do so. 

Caregivers often can feel forgotten, taken for granted, and alone. Sometimes they feel stretched to the point of snapping like a rubber band.

In addition to being a caregiver to someone they love, many also work outside the home. This often involves more than one job to put food on the table. With an already heavy load, some also have children and bear the brunt of raising them. Caregivers might not receive help. They find no reprieve from changing the beds and preparing the meals, or from cleaning up spills and scrubbing stains.

As people with chronic illnesses who still are in a pretty good place physically, mentally, and emotionally, we need to be sensitive to those around us who care for us in ways we can no longer do for ourselves. We need to be aware of how our chronic diseases may affect our partners, children, other family members, and friends, too.

Are we impatient with them? Cranky? Do we expect too much, too often? Can we do things that we expect our caregivers to do? Have we become lazy in cleaning up after ourselves, relying on others to do it when we are capable? Are we helping that rubber band to snap?

As someone with Parkinson’s disease or any other chronic illness, it’s important to be aware of how caregivers are doing, if possible. Do they seem tired or worn down? Do you find yourself being short with them? Impatient? Has it been a while since you thanked them for all they do? Do you encourage them to go out and do something for themselves, such as taking a walk, eating lunch with a friend, or getting a massage? 

Some of us may be in a place where we need someone full-time. If that’s the case, it may be challenging to do more than just be grateful, patient, and thankful. In some relationships, that may be all that is needed for a caregiver to feel appreciated. Sometimes, all a caregiver needs to feel refreshed, even if for a moment, is a sincere “Thank you.”

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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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Intimacy Can Be Challenging with Parkinson’s Disease

intimacy

Sherri Journeying Through

The other day, my husband told me he felt alone. Then he said he felt distanced. How could that be? We are together almost every day, 24/7. But being together and being together are very different, especially when it comes to having Parkinson’s disease.

This disease has many symptoms, of which tremor is the most prominent. Other symptoms are not often discussed, particularly depression. Another that I will discuss in this column is intimacy difficulty. 

Most people with Parkinson’s are aware that intimacy can be an issue for many reasons. One may be an unintentional lack of interest the person with PD may not even be aware of. Another may be pain or discomfort. Yet another may be the inability to “perform.” Any of these reasons can disrupt the relationship, sending messages of rejection or appearing to indicate the partner is undesirable and even unloved. 

First, let me say that, whether you’re the person with PD or the partner, you are not alone. I, too, struggle with this subject for many reasons. I can feel inadequate in many ways, but I didn’t realize I was inadvertently making my husband feel distanced and alone until the other day when we had a heart-to-heart talk.

According to the American Parkinson Disease Foundation, “From lack of sexual desire to low libido to difficulties with orgasmic functioning, this chronic, progressive, neurological disease can impair your sexuality in one way or the other.” The Michael J. Fox Foundation adds that “as many as 70 to 80 percent of those with PD experience sexual dysfunction.”

Dealing with bradykinesia, or slowness of movement, and rigidity can become an issue in a relationship. Symptoms such as tremors and dyskinesia also can contribute to dysfunction and leave one or both partners feeling inadequate.

This also plays out in everyday signs of affection such as hugging, kissing, or holding hands. The person with Parkinson’s can appear aloof to the need for affection and leave a partner feeling more distanced with each day. Before long, both are wondering why the other has stopped finding them attractive and don’t want to be with them sexually anymore. I can’t help but believe that the sad stories I have heard about spouses who have left their partners with Parkinson’s disease are more likely due to a lack of communication than just having the disease.

It’s hard to overcome feelings of inadequacy when they are kept bottled up and aren’t talked about. The first person to talk to about how you’re feeling is your partner or spouse. A frank and honest discussion about the effects of Parkinson’s on intimacy and how to overcome it in everyday life is critical. It might mean an intentional hug in the morning or time set aside only for conversation. (This does not include talking while watching the television.)

Speaking of television, the other day, I was watching a show and at the end, a man proposed to his girlfriend. Of course, she said yes — it was a Hallmark movie, after all. Then the guy said, “I hope the magic never fades.” 

None of us wants the magic to fade, especially if we have Parkinson’s. It’s taken so much already. We need to keep communicating with each other, no matter how hard it may be at times. It’s those times that bind us together more tightly, and the tighter we hold each other, the greater the magic will be. 

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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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Parkinson’s Disease Is a Silent Thief

marriage

Sherri Journeying Through

I read somewhere that Parkinson’s disease robs people of who they were, who they have been, and the person others have known. It affects marriages, too. I read this on the tailcoat of writing about Parkinson’s and the role it can play in the intimacy of marriage.

It’s downright hard living with this little monster. One tries to maintain a sense of normalcy, but that is often difficult when medications decide to “turn off” and stop functioning; when tremors won’t cooperate so a person can write their own name; or when fingers won’t move to tie shoes, button a shirt, hook a bra, or buckle a belt. Put all the physical frustrations together with the cognitive ones, and it can produce one frustrated spouse — either the patient or the caregiver, or both.

Parkinson’s is a thief, indeed. It may rob the person who actually has Parkinson’s, but we also need to remember that it robs the caregiver, too.

I have read or been told many times about a partner of someone with PD who decided to leave the relationship and call it quits. Is that fair? No way. Especially if they had repeated those infamous words, “Till death do us part.” But realistically, it’s not fair for either party. It’s not fair for the one with PD or their partner, who finds themselves having to care for a spouse in ways they hadn’t anticipated in the “happily ever after.”

Life can seem unfair. People change with or without a disease. They bottle things up and refuse to talk about whatever is ailing them, eventually making things appear far worse than they really may be. They think the only way to be free from the perceived culprit that vies for their happiness is to turn around so they don’t have to face it anymore. The problem? They often don’t head into anything better. 

A key component of a good marriage is communication. When dealing with a chronic illness, it is even more important. It’s critical for both partners to talk about how they feel and how the disease affects them.

Following are some suggestions on how to do that:

  •  Take time out regularly to talk to each other. Find a neutral spot to do it. 
  •  Turn off the television for one hour a day and read to each other, play a game, or do a puzzle, if possible.
  •  Bring back dating in your relationship. If you are unable to go to a coffee shop or some other place easily, set a regular time each week to gather at the kitchen table for coffee and cookies.
  •  Sit out on the front porch and watch people.
  •  Hold hands.
  •  Try to have a greater understanding of each other. Get some counseling to get through the tough times.

Don’t give up. There will be better days, better moments. Those are the times we live for, the times that make us want to hold on.

When I was married 39 years ago, my pastor told me that when he married couples, God tied a knot in the relationship, and the harder we pulled against one another, the stronger and tighter the knot would become. Parkinson’s is one thing in our marital relationships that can tighten that knot — if we hold on and let 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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Preparing for a Parkinson’s Hospital Stay

hospital stays

Sherri Journeying Through

Sooner or later, nearly all of us make a trip to the hospital for one reason or another. Just because you are placed in the hands of a capable physician doesn’t necessarily mean you will get the best care, especially if you have Parkinson’s disease. Following are some pointers to keep in mind for that emergency (or scheduled) trip to the hospital.

  • Keep an updated list of medications with you or make sure a caregiver knows where to find the information. Be sure the dosages are listed.
  • Bring someone who knows you well so they can communicate effectively with the staff on your behalf in case you’re unable.
  • Have a list of medications to avoid due to Parkinson’s disease.

Many patients are unaware that some common medications used for conditions such as headaches or gastrointestinal issues may block dopamine. Such medications have been associated with parkinsonism and the worsening of Parkinson’s disease.

Neuroleptics are used to manage symptoms of many psychiatric disorders. That can be a good thing if you need antipsychotic medication. However, for a person with Parkinson’s disease, their use can be life-threatening. 

Among the medications to be avoided are Compazine (prochlorperazine), Phenergan (promethazine), and Reglan (metoclopramide). Other meds, such as reserpine and tetrabenazine, may worsen Parkinson’s disease and should be avoided in most cases.

Having a list of forbidden meds could prove to be as valuable as your list of Parkinson’s meds. 

  • If you had deep brain stimulation surgery and have a rechargeable battery, it is important to bring your battery pack with you to be safe.

Hospital stays for Parkinson’s patients aren’t really all that different than for those without Parkinson’s. However, it’s important to remember that neglecting to discuss your drug regimen could be problematic. If you don’t neglect to do those two things, as a Parkinson’s patient, you’ve done what you can do to have the best stay possible. Enjoy that scrumptious green Jell-O!

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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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The Calm After the Parkinson’s Storm

calm

Sherri Journeying Through

This morning I read a Facebook post from a person who is in the early stages of being diagnosed with Parkinson’s disease. He listed some of his symptoms and said he was awaiting lab results. He asked whether it’s common for symptoms to differ from day to day and if so, why this happens.

Shortly afterward I checked in with my mother-in-law by text: “A few clouds but nothing like the storm that came down last night! Incredible rainfall and wind. And today, all is calm.” 

All was calm yesterday morning, and then the storm clouds began to gather. They hovered overhead all afternoon; no raindrops, just a gradual darkening of the sky. And then, last night while I was at my boxing class, duking it out with a punching bag, God began to duke it out outside with a horrid rainfall that, on my drive home, caused me to drift into the other lane a few times. I was traveling a good deal slower than the speed limit because of poor visibility and with the force of the wind blowing against me, it was a nail-biting ride.

And then the rain eased, and the wind began to abate. It was over — at least for another day.

While trying to formulate a response to the person with a Parkinson’s diagnosis, (don’t you remember those unsettling days?), I checked out the weather, which led me to the answer to his cry for help: Having this disease is like “living” the weather. Your doctor is the weather forecaster, but he can only make predictions because no one can foresee how your disease will progress or maybe even regress. Just as the weatherman can’t predict the next tornado or storm, your doctor can only give you an educated guess at what lies ahead.

You’ll probably have heard this one before: Each person’s experience with this disease is different. It’s true: the variations between symptoms, the severity of those symptoms, and the patient’s reactions to medications can be like night and day.

One day you may feel tossed about and nothing seems to help. At other times your meds kick in, and in 20 minutes, or an hour, a day, maybe even a week, you feel “normal” again — or as close to what you remember as normal. 

But there are other days, and thank God for the other days! Days of sunshine, playing with your grandchildren, working in your garden. Days of writing. Perhaps the reprieve lasts for mere hours or minutes, but you grasp every moment you can. Because — and I know you’ve heard this before — none of us are guaranteed today or tomorrow. And not because we have Parkinson’s, but because that is the nature of living. Parkinson’s is not a death sentence; it is an invitation to live your best now.

After the storm, there is calm. The trees have been stripped bare of their leaves by the fierce winds, and the neighbor’s trash cans have blown into your front yard. You stop to listen and realize that the wind no longer whistles as it passes your windowpanes.

It is still. You take a breath. You straighten things up and return the garbage cans that, thankfully, had been emptied before the storm hit. And you thank God the storm is over, if only for today.

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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 the River of Life in Parkinson’s Disease

river

Sherri Journeying Through

I felt different.

With Parkinson’s disease, that can mean many different things. I may be behind on my anti-depressant and can’t decide whether to laugh or cry. Or I’m behind on my Sinemet (carbidopa-levodopa) and feel shakier than usual. There’s no sense in listing all the ways and reasons I might feel different as a person with PD, other than to say I just feel different.

Sometimes I wake up one day and nothing has changed except my mood. I feel dry, or worse, dried up. I am thirsty for something more. Something greater. I am uninspired, emotionless; emotionally and spiritually dehydrated and thirsty for something to fill up the empty spaces and refresh the parched. This can be borderline depression. It is not a place I wish to go. It is not a place I wish to be.

A while ago, I spent two weeks up in Montana visiting my parents. They live right on the banks of the Kootenai River in a little town tucked in the upper northwest corner of the state. While it can be unsafe to get in the local river there, one can sit at the water’s edge and enjoy it any time and for as long as preferred. The peaceful lapping of water against the colorful boulders at the river’s edge is rejuvenating.

I spent several moments of my day at the water’s edge, sitting on a rock and watching the sunset, thinking about different things, or waiting for my dad’s boat to come around the corner. As I sat there, I wondered why I had felt so dry lately. I had been craving to be filled up, drenched with the spirit of God. Then I realized: Sometimes the dry times are when I find more of God. The times when I feel withered and run out of juice. The times when there is absolutely nothing I can do to get filled up, except to rest in Him and trust Him to bring me through that very empty and very lonely place and into a place of spiritual abundance.

It is often suggested that when writers are in the throes of writer’s block, the best thing to do is just to keep writing, regardless of emotional capacity. Get something on paper. Eventually, writers get back in the saddle to write once again. 

Walking through spiritual deserts is similar. I must keep putting one foot in front of the other, knowing that it won’t be an oasis I’ll find in one of my tomorrows, but eventually, I will find the river of life. How much more refreshing is a river or body of water after having just come from the desert? How much more it is appreciated! It is a river where a person can be drenched with cool, dripping water that saturates the dry places and leaves one refreshed.

If in a “dry” place today, for whatever reason, keep walking the path of this journey He has set. A refreshing river may be just around the corner where God is waiting to refresh spirits.

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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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Being Still Reveals Many Treasures

winter treasures, snow angels

Sherri Journeying Through

It is quiet behind our house this time of year. Not many people are using the pathway that stretches from one town to another. It is cold outside and it pierces my flesh, leaving me shivering as Ip stand and wait. In the silence, I can hear my teeth chatter.

So, what compels me to stand out in the cold and wet of winter?

Nothing. And everything.

I walk the icy pathway. Barren trees lift their branches high into the blue sky above. This is a cotton-candy-blue-sky morning. I almost could forget I have Parkinson’s disease.

The birch tree, with its white bark, stands tall beside me. It almost glows as the sun radiates its light on trunk and limbs. And I see utmost beauty. I stand speechless. It is a beautiful, frosty, winter-morning sight.

Taking a small respite from writing during the holidays, I have learned many lessons this past month from the silence of the keyboard. The rattling of its keys has been minimal. Social conversations via internet sites have not occurred. The telephone has been in the hands of another, and one-on-one phone conversations via satellites and modern technology have been almost nil.

Through the silence, through the barrenness of winter — this dark season of life — God has spoken. A mere whisper perhaps, but He has been there.

One who lately seemed so terribly far away still walks beside me in my struggles with this illness and life itself. In reality, Parkinson’s is much of my life.

But in silence He is teaching me that the faster I walk, the less I see, the less I hear. The faster I live, the more I am lifeless.

I miss the surprises.

I miss the beauty.

I miss the Creator.

I stand on the path. A man on a bike stops to ask what I am taking pictures of. I tell him salmon in the creek. A woman stops, repeating the same question. I tell her downy woodpeckers. They both look — one up into blue and one down into murky waters. They smile politely and continue on their way. They can’t see. They are hurried in their experiencing of life and in their hurry, they miss it.

I listen to the sounds of birds that are wintering over and have found sustenance at my bird feeders. Filled with black sunflowers, thistle seeds, and suet, they sing with thanksgiving before they dive down for another bite.

This — all of this — is a wonderful gift God has given. Regrettably, I too have often walked dark winter’s path without looking up into barren branches. To my regret, I have missed the surprises that are hidden for those who have learned to be still. For those who have learned who God is. For those who are still and not consumed by worry over things they cannot control.

I stand in the cold, warmed by knowing He is gently leading me back — back to a fullness in Him. A fullness that once discovered, once experienced no other can fill, no illness can take.

I stand there, taking in a deep breath of icy air surrounding my face. As my lungs fill with a cleansing cold, I see it and it sees me. There, in the high limbs, a hawk is perched, watching, observing, following me where I move.

I lift the camera and point in his direction and shoot. He is annoyed and removes his talons from tightly held limbs and takes off into flight. As I stand in stillness, I watch with held breath. I want to remember this moment forever. I want to remember this lesson He teaches me. How His wings protect and shelter us underneath. I want to remember in stillness there is greater sight.

I want to remember to live. Unhurried. Full of life. Full of thankfulness. Full of gratitude. I want to be a grace extender. I want to live in stillness, knowing deep in my being just who God is in my life: Hope-maker. Fear-taker. Peace-giver. Illness-comforter. Grace-coverer. Stillness-trainer. Life-sustainer. Soul-redeemer. Silence-creator. 

Day after day after day.

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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 Choosing to Keep a Positive Attitude

positive

Sherri Journeying Through

When handed a diagnosis of Parkinson’s disease (PD), we accept it with a handful of pessimism. After all, when you’ve just been told you have a new life path and it’s Parkinson’s disease  — when you were quite happy with the old one — it’s difficult to see any good that can come of that news.

Our lives can go from hopeful to hopeless, encouraging to discouraging, fearless to fearful. What seemed to be uncertain has now been clarified, and fear jumps into the picture faster than green grass through a white goose. Optimism is overrun by pessimism and all of the negativity that is attached to that bad 10-letter word: “Parkinson’s.”

The more negativity we assign to this disease, the more power we give it. We need to be realistic, but we also need to be fearless — and being fearless is not being unrealistic.

We must recognize that being fearless does not mean to be lacking in all fear toward that which scares us; whether the source of our fear is Parkinson’s, cancer, or spiders. Instead, if we take it super-literally, we could say it means to fear less. After all, no one is free from fear. We may not fear spiders, but perhaps we fear snakes. Maybe a visit to the dentist doesn’t worry us, but we’re anxious when alone in the dark?

A professor of mine once said, “It’s not the dark we fear, but the things we can’t see in the dark.” Parkinson’s is, for the most part, one of those things we tend to fear because we can’t “see” it and therefore we allow it to swallow us up with pessimism. When we allow pessimism or fear to rule us, we close the gate to optimism and courage. We say “yes” to despair and “no” to hope; “yes” to snakes and “no” to sunshine. 

Living with Parkinson’s is hard; that fact is indisputable. But we can choose to be optimistic or live pessimistically. We can see the sunshine through the storms, or just see the storms. We can choose hope or defeat; it is ultimately and always our choice.

I’ve heard that keeping a positive attitude is stronger than any pill you can take. I am choosing to be positive and optimistic through the shaking, pain, and fear. For if I allow pessimism to be my drug of choice, I won’t have a story that I would want to share.

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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.

The post I’m Choosing to Keep a Positive Attitude appeared first on Parkinson’s News Today.

The ABCs of Parkinson’s: It’s Not Just About Shaking

tremor, shaking

Sherri Journeying Through

The next letter in a series on the ABCs of Parkinson’s is “N.” This is because the disease is not just about shaking.

When the topic of Parkinson’s disease comes up, it’s often met with a misunderstanding of what it really is. People immediately think of someone who shakes, if indeed they know much about the disease at all. But that’s not what Parkinson’s is. It does entail tremors, or shaking, but it is so much more than that.

Parkinson’s is not just shaking in one or more of the extremities (hands, arms, legs, and feet). While shaking can occur in only one extremity, it also can happen with all of them. It can include other parts of the body such as the head, the neck, the “insides,” the eyelids, or the mouth.

But again, Parkinson’s is not just about shaking.

When someone sees a person flailing about as they are walking/shuffling down the street, they may assume the person may have had a bit too much to drink. This is not necessarily true. Parkinson’s may (and has been known to) take the appearance of a drunken sailor, but the flailing about is not PD. It is a side effect of the medications taken to cope with the disease. Sad, but true.

Parkinson’s disease is unpredictable. PD is not a disease you can define other to say that it is ever-changing from one person to another. You may know someone with Parkinson’s, yet you will not find another who experiences the disease in the same way. There is nothing certain about the disease. It is not predictable. 

Most people do not, and cannot, understand this often misunderstood disease. They focus on the tremors or the dyskinesia (flailing about). They do not understand it may (or may not) entail other lesser-known symptoms such as depression, apathy, constipation, and irritable bowel syndrome, drooling, and skin concerns. Other invisible symptoms can include sleep disorders, loss of smell, cognitive issues, moderate to extremely severe pain, dystonia, facial masking, visual and speech issues, mood changes, blood pressure irregularities, tripping, a shuffling gait, restless leg syndrome, and urinary dysfunctions, to name a few more. Yet, these still are not all of the symptoms.

The symptoms of Parkinson’s disease are misunderstood because basically, they are not visible and therefore can’t be evidenced in most people who have PD.

We often do not believe in something we can’t see, diseases included. Many times we choose to believe a person is not struggling or suffering because we can’t see below the skin to where the real pain is occurring. That’s because Parkinson’s is not just about shaking. It’s so much more than that. 

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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.

The post The ABCs of Parkinson’s: It’s Not Just About Shaking appeared first on Parkinson’s News Today.