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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: ‘J’ Is for the Junk and Jewels of PD

jewels

Sherri Journeying Through

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

You’ve likely heard that one’s man’s junk is another man’s treasure. Well, if not, you just did. One of my favorite things to do is to go to yard sales or thrift stores. I don’t look for anything in particular, but when I see something that catches my eye, I know that I have just stumbled upon a treasure that someone else threw in the “junk” pile.

Fifteen years have passed, come December, since my Parkinson’s disease (PD) diagnosis, though I’ve dealt with symptoms for over 20 or more. When I was told I had PD, I didn’t know much about it. I didn’t realize its implications, nor did I know what was (or could be) waiting for me down the road. I wondered how anything good could come from having a disease without a cure.

But then I met a stranger online through a PD chat room. Jewel 1 of having Parkinson’s disease was a stranger who became a close friend. Parkinson’s has come between some relationships in my life (junk) but it has also provided new, deep relationships in my life (jewel).

Jewel 2 is that my attitude regarding doctors was restored to a positive place when I met my movement disorder specialist. I had some pretty rotten experiences when it came to doctors, but his compassion, wisdom, humor, and availability gave me a renewed appreciation for doctors, especially those who have a great bedside manner.

Among the junk of PD, I have found other jewels. I learned to appreciate anew the time given to me right now; time to spend with my husband, my grown-up children, and my grandchildren. I have discovered just how important that jewel is, and it is perhaps my most treasured. Time is already short for each of us. Adding any sort of illness into the mix shortens that lifespan for so many reasons. Cherish the fleeting moments and live your best self through each one. 

Gratitude is just one more jewel I have experienced among the junk of PD. I was taking a walk with my grandson the other day and he kept looking up at the sky and smiling. I asked him what he was thinking. He looked up again, smiling, and replied, “The sky is just so blue.” A child sees through the eyes of wonder and often through unprompted thankfulness. It is a great joy to taste life through a child’s wonderment.

When experiencing discouragement or despair or if you’re just having a not-so-good day, try and find a jewel in your life. They are there. You may just have to uncover them.

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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: ‘J’ Is for the Junk and Jewels of PD 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: ‘G’ Is for Girls, Gaits, and Gifts

A continuation of the “ABCs of Parkinson’s” series.
The girls
OK, OK. So I’m reaching for examples of the letter “G” to fit for this section. Girls? Yes, girls, speaking toward the female sex. And there is evidence that between boys and girls — er, men and women — that the men outnumber the women when it comes to Parkinson’s disease.
According to ParkinsonsDisease.net, “Parkinson’s disease (PD) is found more frequently in men than in women, occurring in men 50% more than in women.” Is there a reason, an explanation, for this? According to the same article, researchers haven’t yet discovered the answer to that question but suggest that “the protective effect of estrogen in women” may have a role to play. Researchers also tend to attribute head trauma (such as that found in football players, boxers, etc.), which is higher in men than women, as part of the reason for Parkinson’s.
The gait
While there may be differences between men and women when it comes to having Parkinson’s disease, there are also similarities in the symptoms they share with the disease. This includes issues with gait. Because it is one of the symptoms of Parkinson’s that can be seen, it tends to draw undesired attention. 
There is a freezing of one’s gait, which is basically just that: the inability to walk in a smooth, fluid motion without stopping. The patient “freezes up” and has difficulty moving or stepping forward.
Patients also have what is known as a shuffling gait, noted by the appearance of the patient dragging their feet and appearing to fall forward when they walk. These symptoms (a freezing or shuffling gait) usually develop over time during the disease’s progression.
The gifts
Many people with Parkinson’s disease have made reference to having been given a “gift,” so to speak. They feel that priorities shifted after finding out they had Parkinson’s disease. What once was important was no longer, and what is now important, once never was. Family and friendships became foremost. The ability to see what was truly important in life became clearer. Taking things for granted became obsolete and being thankful took on new life. New friendships have formed through having Parkinson’s or being a caregiver of a person with PD.
Gifts don’t have to be wrapped with bows and wrapping paper. Some of the best gifts can’t be wrapped at all, or they come wrapped in flesh. We may have to struggle with other aspects of Parkinson’s disease, but when it comes down to deciding whether PD can be considered a gift or not, it all depends on the recipient.
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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

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