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The ABCs of Parkinson’s: ‘K’ Is for Knowledge

knowledge

Sherri Journeying Through

A continuation of the “ABCs of Parkinson’s” series.

When diagnosed with Parkinson’s disease (PD), or any disease, it is always beneficial to educate yourself about it. Ask yourself: Do they know what caused it? What are the symptoms? How can I best care for myself? Is there a cure?

Knowledge is a good and powerful thing. However, too much knowledge can be detrimental to your health.

Upon receiving a Parkinson’s diagnosis, each patient’s reaction will differ from another’s. You may want to know more. You may want to know little or nothing about the disease at first to allow yourself time to adjust or grieve. When you get to the point of wanting to know more about PD, tread carefully and cautiously. While there is a plethora of information out there to soothe those hungry for knowledge, not all sources are created equal.

Look for studies and research carried out by credible institutions and conducted relatively recently. You’ll find articles citing studies published five or more years ago, written as though the research is new. While the information may be still relevant, check if more up-to-date research is available. 

Many publications report on the findings from new studies. Take care not to overwhelm your brain. You don’t have to read all 112 articles on the research; a couple from your favorite publishers will be sufficient unless you are writing a research paper or testing your brain to see how much information it can hold.

Too much knowledge can cause unnecessary anxiety and stress. Parkinson’s is a unique disease for each patient and symptoms, medications, and the effects of treatments can vary from one individual to another.

I’d just finished reading a post on Facebook by a woman who was recently diagnosed with PD and wanted to know what to expect. The very first reply from a disgruntled caregiver who desperately needs a break would have scared the bejeebers out of me if that reply was the first bit of solicited advice I had received.

Go easy on the “knowledge” you give to a newbie. We are here to encourage them on their journey. The last thing they need at the onset of diagnosis is to have the living daylights scared out of them with all of the knowledge we’ve acquired. That wouldn’t be prudent or wise.

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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: ‘K’ Is for Knowledge appeared first on Parkinson’s News Today.

The ABCs of Parkinson’s: ‘I’ Is for Invisibility

Sherri Journeying Through

A continuation of the “ABCs of Parkinson’s” series.

When people hear Parkinson’s disease (PD) mentioned, their memory likely turns to thoughts of Michael J. Fox or someone who shakes all the time. Their memory would serve them well. However, if that is the only thing they think of at the mention of PD, their memory needs more input.

Parkinson’s includes shaking, involuntary movements, rigidity, a stone face, an awkward gait, and other outward signs. What most people without PD aren’t aware of is that the disease is also known for invisible symptoms. Because of its invisible symptoms, it is classified as one of many invisible illnesses along with diabetes, multiple sclerosis, rheumatoid arthritis, and more.

Many patients aren’t even aware of some invisible symptoms that are prevalent with PD until they’re diagnosed, causing extra anxiety over how to deal with all that’s happening. Based on stories from others with PD, I would even say some doctors are even unaware of some of the signs. That is one reason it is extremely important to find a movement disorder specialist (MDS) as soon as possible. A neurologist is good, as they’re specialized in a certain niche of medicine. An MDS is better, having gone a step further and specialized within the niche of Parkinson’s itself.

Some commonly known invisible signs are the loss of smell, handwriting changes, and fatigue. Some lesser-known signs are internal tremors, rigidity or stiffness, nightmares and difficulty sleeping, restless leg syndrome, hallucinations, anxiety, depression, poor balance, inability to get comfortable when sitting or lying down, memory problems, apathy, incontinence, constipation, drooling, and more.

Parkinson’s may appear invisible, but its symptoms are undeniable in the patient. Someone with PD may appear to be doing fine, but just ask them what’s going on beneath their skin. All may not be as it appears.

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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: ‘I’ Is for Invisibility appeared first on Parkinson’s News Today.

ABCs of Parkinson’s: ‘H’ Is for Heroes

heroes

Sherri Journeying Through

A continuation of the “ABCs of Parkinson’s” series.

Ninja Turtles. Batman. Superman. Wonder Woman. 

If you were to list today’s heroes, the list would most likely contain those mentioned above, the tried and true of all “heroes.”

When it came time for my 10th-grade son to tell the class what his term paper would be on, he said, “superheroes, because everyone needs a superhero.” His teacher thought he was joking.

I participated in a walk to promote awareness of Parkinson’s disease (PD) a few years back. We were given T-shirts with “Parkinson’s Hero” splashed across the front. I struggled with wearing that T-shirt for a long while. I didn’t feel like a hero. I didn’t dress like a hero. I didn’t look like a hero.

A few weeks ago, I passed a wildland fire truck. My son is now a wildland firefighter. He took his “everybody needs a superhero” comment seriously. I gave the crew a thumbs up as I passed, thankful that there are men and women doing hero stuff in real life. Men and women who go where most others will not go and do what most others will not do — all for the sake of someone else.

What is a hero, anyhow? A hero is defined as someone “noted for courageous acts or nobility of character. A person who, in the opinions of others, has special achievements, abilities, or personal qualities and is regarded as a role model or ideal.”

I wouldn’t say that all people with Parkinson’s fit that description, but they could to some degree. I know some people with PD or caretakers of those with PD who have done courageous acts — climbed outrageously high mountains, biked long, hard miles, walked across rough and rocky terrain for miles, and more — all for the sake of bringing attention to a cause they deem worthy. Something like Parkinson’s disease research and awareness. Then, there are those who “accomplish” much less, it might seem, but bring just as much attention to the cause. 

We all do what we are able to do with our diseases, even if it means just getting up in the morning. There are times I have gotten down on myself for not doing more. Times I have told myself that writing a blog, speaking about my disease, and advocating for people who have PD is not enough. Times I thought I should be climbing mountains, sailing seas, opening exercise centers, and raising millions of dollars for PD. 

I can’t. Nor do I feel called to do all that. I met a woman with PD, Karen Jaffe, who puts together a comedy night each year and has raised over a million dollars now for the Michael J. Fox Foundation. I know a guy, Enzo Simone, who climbs a mountain a year to bring awareness to PD and Alzheimer’s. I have a good friend, Judy Hensley, who asks people she meets to don her crazy-colored Parkinson’s parka (otherwise known as Da Coat) and gets a picture of them in it as she tells them about Parkinson’s disease.

One isn’t more courageous than the other. It takes as much courage to climb Kilimanjaro as it does to organize a huge fundraiser, as it does to talk about PD to a stranger. I believe those people are heroes. They are people of selfless character who make it possible for others to go further in life, whether it’s taking the baton high on a mountaintop or being granted another day and living it well. These are people who have achieved something noteworthy and inspired countless others. They have been role models for those who can’t, or choose not to, advocate for Parkinson’s or other chronic diseases, disorders, and disabilities. They are somebody’s hero.

The next time you meet someone with Parkinson’s, Alzheimer’smultiple sclerosis, cystic fibrosis, cancer, diabetes, or _________, thank them, along with your firefighters, local policemen, nurses, and _________. They are fighting the battles that others know nothing about. Battles that create real heroes.

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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 ABCs of Parkinson’s: ‘H’ Is for Heroes appeared first on Parkinson’s News Today.

The ABCs of Parkinson’s: ‘F’ Is for ‘Fear’

fear

Sherri Journeying Through

Editor’s note: A continuation of the “ABCs of Parkinson’s” series.

“You have Parkinson’s disease.”

“What exactly does that mean?” I asked.

While I waited for a response to my question, my thoughts covered a multitude of fears in a minimal amount of time. I sat and listened to my doctor’s explanation, which began sounding like background noise. I answered no to the question of whether I had any questions, when in fact I had multitudes but didn’t want to hear the answers for fear of what they might be. I was loaded with a sample starter of Mirapex (pramipexole) and something else I can’t remember for lack of paying attention. Then, I said thank you, scheduled the next visit, and left. 

“It’s gonna be OK,” my husband tried reassuring me later at home. But, how did he know what OK looked like and if I was going to like the picture?

I know as well as the next person that fears are normal. They can be both healthy and destructive. I know fear is common among people with Parkinson’s disease. As I began learning more about PD and acquiring information about the disease, I saw that fear was not only a real part of Parkinson’s but something that was rarely ever mentioned, let alone discussed. Were we supposed to be brave on the outside while we were shaking like crazy on the inside?

I had a professor in college who said it’s not that we fear the dark but that we fear the things we cannot see in the dark. I suppose you could then say — as a person with a chronic disease — that we often find it easy to “live in the dark,” as this disease manifests itself with things we can’t see. Things we didn’t know would be coming. We aren’t so much afraid of Parkinson’s disease or having it. It is safer to say that we fear what Parkinson’s could, can, and will do to us. 

My edition of Merriam-Webster defines fear as “a reason for dread … taking the form of terror, horror, panic, alarm, dismay, consternation, and trepidation.” Yep. I’d say those terms fit. 

Fear can be my greatest enemy in this journey with Parkinson’s disease. It can cause anxiety at every level. Honestly, dread, terror, panic, dismay, and consternation have all had their heyday with my mind when it comes to this disease.

At times in my life, I have felt powerless because of this disease. I have experienced moments of terror when an intense, overpowering fear has swept over me and consumed my thoughts with the what ifs. Panic has seized me in the most unexpected moments: seeing a person in a wheelchair, a woman who shuffles into the store in front of me, an older man who drops his coffee mug because his hand is shaking. There are reminders all around that cause me to panic and be reminded that this could be me in five months, or two years, or six days, or …

I have been dismayed and at times have lacked the courage and the power to fight this monster. I have felt paralyzed by the confusion of what to do next, helpless in this new battle I was chosen for, and afraid that I may not know how to fight well, or may not have the necessary weapons.

What do you do with that feeling of helplessness and dread? What do you do when panic consumes your life and leaves you exhausted and powerless?

I can’t accomplish much of anything when I’m feeling overwhelmed, and my mind is confused and cluttered. Eventually in my struggle, I remember and believe that the God who made me will not allow this trial to consume me, nor will He leave me defenseless to fight it alone. Some say that religion or God is for those who are weak. You can call me weak.

There is comfort in knowing that I don’t face the battles of this disease alone. The unknowns. The what ifs. If I truly believe what I write, then I can step out and do what often seems impossible to do in the darkest valleys: face my fears. What makes that possible is faith. And it is faith that gives us hope.

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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: ‘F’ Is for ‘Fear’ appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

The ABCs of Parkinson’s: The Letter D

the letter D, drooling

Sherri Journeying Through

Fourth in a series. Read part one, two, and three.

In this column, the letter D is for dystonia, drooling, and dandelions.

Dystonia

Dystonia is a neurological movement disorder that causes sustained muscle contractions (ouch!). Twisting and repetitive movements or abnormal postures (more ouch) can be a part of having Parkinson’s disease. Symptoms can include disturbed sleep patterns, tiredness, depression, poor concentration, changes in vision, and more.

The disorder is more likely to affect the side of the body that is most influenced by Parkinson’s. It can impact a single muscle or a group of muscles, but for people with Parkinson’s, it mainly affects the feet (curling in of the toes — ouch again!).

Now, what may seem like an odd treatment may be one of the best received and most helpful: a big hug. When encased in a tight “bear hug,” the tension and tightening of contracted muscles are often released.

There aren’t many diseases (if any, that I am aware of!) that respond to such a simple, welcome treatment. So, the next time you’re struggling with stiffness, spasms, and pain associated with having Parkinson’s disease and dystonia, ask a loved one to give you a tight bear hug and hold you for a few minutes. You’ll not only feel better physically but in every other way as well (and so will they). There is healing in a hug — for everyone involved.

Drooling

Another “D” word of Parkinson’s is drooling. “Drooling?” you ask.

Yes, drooling. If you’ve never seen the movie “Beethoven,” it is a story about a huge St. Bernard dog that slobbers and drools all the time, shaking his liquid yuck all over the house and those who inhabit it. The drooling issue in Parkinson’s reminds me of Beethoven when my saliva finds its way towards my lips and lets loose, dripping down my shirt and puddling to the floor. Classy.

A terrific article by Dr. Maria De Leon gives great information on what causes this oh-so-wonderful symptom. She also shares suggestions for how to deal with it. You may be experiencing embarrassment and social humiliation due to drooling excessively and at inopportune times. Thankfully, exercises and medications can help.

Dandelions

Sometimes we feel so out of touch with the rest of the world while we live in our own little world of Parkinson’s disease. We’re not who we used to be, and others don’t understand us anymore. We talk differently. We walk differently. We think differently. We are different.

My daughter-in-law once told me her favorite flowers were dandelions. “Dandelions,” I thought. “Dandelions are weeds.” A few years later, I passed a field inundated with dandelions. A beautiful field. One that took my breath away.

You see, when people see a dandelion, most see a weed that they want to yank out and toss away. They see something useless. Some people, however, see something beautiful.

You may feel like a weed — useless and without purpose. But you’re not. People see your struggle, and your story brings a smile to their faces. Your beauty inspires them. So, next time you’re cramping up because the pain and contortions are taking over or the drooling can’t be stopped, remember you are a dandelion, not a weed. Something truly beautiful.

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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: The Letter D appeared first on Parkinson’s News Today.

Source: Parkinson's News Today