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Learning to Live Simply With Parkinson’s Disease

wish, fires, silent symptoms, marriage, tasks, bucket lists, forgetfulness

A sign hangs above my desk with only one word on it: “Simplify.”

The sign isn’t fancy by any means. But it does make me stop to ponder what that small word means to me. And it must have made an impression for me to fork out $3 to buy it. 

It may seem elementary, but somewhere in its simplistic message, a great freedom can be found. This type of freedom whispers to our heavy hearts to let go, to simplify, to take what seems complicated and make it simple. But is that possible with Parkinson’s disease?

Parkinson’s is complicated, there’s no doubt about that. It’s a tough illness, as are so many others. Because it’s tough, it’s important to make our journey with it as simple as possible. We simplify by letting go of things, and sometimes people.

I recently read somewhere (I can’t remember where) that Parkinson’s is the “big litmus test” of the people meant to stay in our lives. I would add, “And the people we need to let go.”

Just as things in our life can drag us down, so can people. Family, friends, acquaintances all have the capacity to hurt us, and unfortunately, they will (and vice versa).

We can start simplifying our lives by forgiving and then letting go. Make a stand for newfound freedom by not allowing the past to rob you of the good days you have left. Clear the clutter from your emotional life and move on.

The places that make you anxious are the places that may need simplification. As our emotional and mental lives become cluttered and need simplifying, so can our material lives. When we leave our homes cluttered and filled with stuff, it can affect us mentally. 

I remember years ago a friend told me her husband “got it.” After coming home and finding her in tears after a long day with three little ones, he started cleaning up the kitchen. She asked him what he was doing. 

“When the house is a mess, you’re a mess,” he responded.

He did get it. Wise man.

As this disease progresses, my memory seems to forget things I wish to remember. So, I make lists to lighten the anxiety I often feel when I forget something.

I have daily and weekly lists. My daily list includes when to take medications, and it makes time for exercise. It has a time slot for reading,  journaling, household duties, and phone calls I need to make. Distraction can be part of the disease, so having even the simplest of lists makes this disease more manageable. 

We can bring simplicity into our lives in many ways, but this about sums it up: Live simply so that you may simply live.

In other words, simplify!

***

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 Learning to Live Simply With Parkinson’s Disease appeared first on Parkinson’s News Today.

Holding Your Thoughts Captive to Ease Anxiety

silent symptoms, marriage, tasks, bucket lists, forgetfulness

I was doing OK until I read the title of a webinar: “Navigating the New Normal.” Then it hit me — there is no normal. As they say, normal is just a setting on your clothes dryer.

There is no normal in disease, and there is no normal in life. Once we begin to make ourselves comfortable and fall into a routine with Parkinson’s disease, the cart overturns. Again. We are left in a jumbled state of confusion.

What once was routine now needs to be altered and adjusted to fit what some refer to as “the new normal.” What once was familiar, typical, and common in our day-to-day routine has bolted from our life. 

Everything keeps changing, and change often brings anxiety, nervousness, fear, and more. 

I don’t do well with change. Familiarity is what comforts me. I don’t like carrying around feelings of anxiety. But how do I keep from being blindsided and allowing that to happen?

I have had a panic attack a few times while lying in bed. These attacks can be triggered by my rampant thoughts and are common in Parkinson’s disease.

I have had thoughts of panic over this insidious disease. Financial hardships and unfinished tasks can lead to a racing heart and shortness of breath. Some people who are struggling with Parkinson’s disease have had the additional stress of unfaithful spouses or caregivers who have passed away.

How does one cope with those new normals? How does one deal with the anxiety those situations bring?

The one thing I have learned is to take my thoughts captive. I try not to allow them to run loose through my mind. Panicking is a reaction to things we think we have no control over. Panic is anxiousness run amok and the means by which we are led into despair.

When you are tethering your thoughts, substitute them with positive ones. It is helpful to read something comforting like poems, hymns, or the Psalms, if you are a Christian. Singing breaks down anxiousness, too. These ideas won’t cure you from attacks, but they may help you get through them.

You may have to live disabled in your body, but you don’t have to become mentally disabled by your thought life. Choose to be hopeful, not anxious. Choose to focus your thoughts and your feelings on what brings you peace. No matter what changes in life, focusing on hope and practicing peace will never leave you blindsided.

***

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 Holding Your Thoughts Captive to Ease Anxiety appeared first on Parkinson’s News Today.

We Have the Right to Grieve Parkinson’s Disease

marriage, tasks, bucket lists, forgetfulness

Ashen faces stare forward, their lifeless eyes fixated on the pine box before them. Some weep, while others watch with blank expressions void of emotion. Both represent the grief that hangs heavy in the room.

Death does not hold the rights to grief. 

Some might say that grief comes from the passing of a soul from life here on Earth. Yet, other events merit grief as a legitimate emotion, not only in dying, but also in living. These might include a lifelong relationship coming to an end through betrayal, the loss of innocence, divorce, a chronic or terminal illness diagnosis, or longing for children while remaining childless. 

Bright cotton candy clouds, once displayed against a baby blue sky, have now faded into grays of every hue. The wind has taken to whistling as it slams a downpour of raindrops to the earth, mocking us with its song of fear. Nothing feels safe from the storms that seem to attack — not your joy, hope, faith, or courage. They are all tested in the wake of grief.

The doctor tells you, “You have Parkinson’s disease” (or another chronic or terminal illness). A million thoughts vie for space in your brain, and they tend to settle on fears about what could lie ahead. 

Thoughts and feelings are stirred up because of the anxiety we experience. It is normal to experience grief at times like this.

We can feel as if we’ve become like a puzzle waiting to be put back together, but we are learning. But we can never be put back together the way we once were, when all the pieces fit nicely and neatly. 

Has all the good disappeared because we now have Parkinson’s disease?

Your joy exists, but because you wear the Parkinson’s “mask,” others assume you are grumpy. Because of the mask, you look grumpy, and due to the suggestion, you begin to feel grumpy.

Hope seems elusive. You want to trust in something or someone greater than yourself, but grief leaves you unsure of what to believe. 

Can your faith hold up under the diagnosis of a debilitating, lifelong disease? Can you muster the courage and strength to go the distance with this monster? How do you get over grieving Parkinson’s?

Over versus through

Like grieving a death, with time, it gets easier to accept your new path in this life. I don’t believe one ever gets over the shock of a Parkinson’s diagnosis, but you can get through it. 

The 5 ‘we musts’

We must try to stop dwelling on the “what ifs”: What if this goes from bad to worse faster than they’re telling me? What if one morning I wake up only to discover I am no longer able to move? What if my spouse leaves me?

We must replace the “what ifs” with truth: This disease has no guarantee that it will progress quickly or slowly. We must learn to take one day at a time, remain thankful for that day, and make the most of it. 

We must not dwell on the thoughts that chain us to the fear and the darkness, allowing it to engulf our spirits. Instead, we must fill our minds with things that will encourage and inspire us. 

We must get up, get out, and do the things that bring us joy, even if we can only do it for five minutes at a time. We must start somewhere. If we don’t, we will give fear a foothold in relation to our joy and peace.

And when we are starting somewhere, we must find someone to walk the journey with us who will help us to endure to the end.

Misery loves company, some say. People who are feeling miserable draw comfort from others who are miserable. 

I say misery does love company, which is why we need the type of company that encourages and supports us, lifts us up, and stays by our side while we grieve, until finally we are able to see the blue in the sky once again. 

***

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 We Have the Right to Grieve Parkinson’s Disease appeared first on Parkinson’s News Today.

Anxiety Due to COVID-19 and Treatment Access High in Iran, Survey Finds

anxiety

A survey of people with Parkinson’s disease in Iran found significantly higher levels of anxiety due to the COVID-19 pandemic among them compared with the general population, a study reported. 

Patients’ anxiety was primarily driven by fears of contracting the virus as well as not having access to medication. 

The study, “Incidence of Anxiety in Parkinson’s Disease during Coronavirus disease (COVID-19) pandemic,” was published in the journal Movement Disorders

Anxiety is known to trouble people with Parkinson’s disease more frequently than those with other chronic medical conditions. Those feelings can be heightened by the recent outbreak of SARS-coronavirus-2, the virus that causes coronavirus disease 2019 or COVID-19.

For this reason, researchers at Shahid Beheshti University of Medical Science, in Tehran, surveyed Parkinson’s patients who were referred to the local movement disorders center. 

Their online-only study was based on the Beck Anxiety Inventory (BAI) questionnaire — a 21-item self-reported survey of anxiety, with scores ranging from 0 to 3 for each item. A higher total BAI score reflects higher levels of anxiety. 

A total of 137 people diagnosed with Parkinson’s responded to the questionnaire, along with 95 caregivers. As a comparison, 442 people without Parkinson’s or dementia, matched by age and sex, were also surveyed. The average age of the patients was 55, and around two-thirds were women. 

Demographic information regarding levels of education and occupation were also collected, as was information on disease duration, co-existing conditions, and medication use independent of Parkinson’s therapies. 

The analysis found a significantly higher average BAI score for anxiety (18.34) among Parkinson’s patients compared with the control group (average of 8.9). Among caregivers, the average BAI anxiety score was 10.53. 

Severe anxiety was reported in more than 25% of patients, compared with 4.8% of control participants; 56.3% of the control group reported no anxiety while 18.2% of patients felt the same. A majority of caregivers, 60%, had some level of anxiety, with 4.2% reporting severe anxiety. 

As expected, fear of catching the virus correlated with anxiety in Parkinson’s patients, and strongly with the severity of anxiety. While disease duration was not linked to anxiety severity, those with co-existing conditions expressed higher levels of anxiety.  

Around 20% of patients reported the Covid-19 pandemic had worsened their symptoms, and almost half were concerned about access to ordering medications. Up to 28% of patients believed they were more susceptible to the infection than others, and 12% reported using more Parkinson’s medications during the pandemic than they had previously. 

“Although long term impact of COVID-19 pandemic on [Parkinson’s] patients is yet to be determined, it seems that these patients are more prone to psychological disturbances due to imposition of quarantine measures, social distancing and fear of getting infected by COVID-19,” the researchers wrote.

“These psychological disturbances may be due to worsening of a preexisting anxiety, uncertainty regarding obtaining medications during lockdown and perceived higher risk of contracting COVID-19 due to an underlying chronic medical condition,” they added. 

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Non-motor Symptoms Affect Sleep Quality in Early Parkinson’s, Study Finds

sleep quality in early Parkinson's

People with early-stage Parkinson’s disease and non-motor symptoms such as depression, anxiety, urinary tract issues, and hallucinations or delusions are more likely to experience sleep disorders, a recent study has found.

Better cognitive function appears to predict better sleep quality in these patients, according to the researchers who conducted the study, titled “Nonmotor Symptoms Affect Sleep Quality in Early-Stage Parkinson’s Disease Patients With or Without Cognitive Dysfunction” and published in Frontiers in Neurology.

Parkinson’s is characterized by motor symptoms such as tremor, slowness of movement (bradykinesia), and uncontrolled involuntary movement (dyskinesia), as well as by non-motor symptoms including sleep problems and cognitive decline.

In Parkinson’s, sleep issues include not only difficulties in falling asleep but also sleep fragmentation, temporary paralysis during the night, obstructive sleep apnea, and daytime sleepiness.

Several non-motor symptoms of the disease, such as depression, anxiety, and excessive urination at night (nocturia), are known to affect sleep quality in Parkinson’s patients. But not a lot of research has been done on the potential link between non-motor symptoms and sleep quality among those with early-stage disease, either with or without cognitive impairment.

To address this, a team of researchers in China assessed a group of 389 patients with early-stage Parkinson’s disease who had been diagnosed in the previous five years. Patients were an average of 63.9 years old, and 63.5% were men.

After answering a questionnaire about their demographics and clinical information, participants were assessed for sleep problems using the Parkinson’s disease sleep scale (PDSS) and for cognitive function with the Montreal Cognitive Assessment (MoCA).

Motor symptoms were examined with the Unified PD Rating Scale (UPDRS) part III and global non-motor symptoms with the Non-Motor Symptoms Questionnaire (NMS-Quest). Depression was also assessed with the Hamilton Depression Scale (HAMD), while the Hamilton Anxiety Rating Scale (HAMA) was administered to examine anxiety.

Results showed that 23.7% of participants reported significant sleep problems, and 39.8% had cognitive impairment. More patients with cognitive impairment experienced sleep disorders than those without (34.8% vs. 16.2%).

Patients with and without sleep disorders were fairly similar in terms of sex, age, disease duration, levodopa-equivalent dose, and motor symptoms. But those with sleep disorders had higher (worse) scores in seven of the nine subdomains of the NMS-Quest, including gastrointestinal symptoms, urinary tract symptoms, apathy/attention/memory, depression/anxiety/anhedonia, cardiovascular symptoms, and miscellaneous.

This same population also had higher scores in all domains of the HAMD scale, which is indicative of depression, and the HAMA scale, indicating anxiety.

Those with sleep disorders also had worse overall scores on MoCA and in the specific domains of naming, attention, delayed memory, and orientation, compared with those without sleep problems.

The researchers then divided the patients into groups according to whether or not they had cognitive impairment to study the differences among those with and without sleep problems in each group.

Of those without cognitive problems, patients with sleep disorders had worse motor symptoms, a more advanced disease, and used a higher dose of levodopa than those without sleep disorders.

After controlling for these differences, the team found that people with sleep problems also had worse scores on the same seven domains of the NMS-Quest as those in the overall population, had worse scores in depression, and more frequently experienced anxiety. These patients without cognitive impairment but with sleep problems also had worse cognitive function.

Findings were largely similar when people with and without sleep problems were compared in the group with cognitive impairment. But cognitive function was not significantly different between the two groups.

Statistical analysis to determine which symptoms were associated with poor sleep quality demonstrated that urinary tract symptoms, hallucinations and delusions, a feeling of hopelessness, and anxiety all significantly increased the odds of having sleep disorders. But a better cognitive performance, particularly in the orientation domain, lowered these odds by about 88%.

In the group of patients with cognitive impairment, hallucinations and delusions increased the odds of sleep disorders by nearly four times, greater scores in the HAMD scale weight loss domain increased them by twofold, and anxiety by 15%.

Among those without cognitive impairment, factors increasing the odds of sleep disorders included greater anxiety scores and higher levodopa doses, while better cognitive performance on the naming and orientation domains were predictive of better sleep quality.

These findings suggest that approximately one-quarter of Parkinson’s patients experience sleep problems, and that there is an association between the presence and severity of non-motor symptoms and sleep quality.

“Patients with cognitive dysfunction suffered a higher percentage of sleep disorders,” the researchers wrote, suggesting that “better cognition may predict better sleep quality.”

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Parkinson’s Expert Offers Tips About Enduring the COVID-19 Pandemic

Parkinson's and COVID-19

An estimated one million Americans have Parkinson’s disease. Nobody knows how many of them also are infected with COVID-19, but the experts do offer sound advice about how Parkinson’s patients can avoid getting sick in the first place.

Rachel Dolhun, MD, is vice-president of medical communications at the New York-based Michael J. Fox Foundation (MJFF). In an April 23 phone interview with Parkinson’s News Today, Dolhun boiled down her advice to six words: stay connected, stay active, stay present.

Rachel Dolhun, MD, is vice-president of medical communications at the Michael J. Fox Foundation. (Photo courtesy of MJFF)

“There are so many ways now that we can connect with other people and be part of a community, even though we’re physically apart,” said Dolhun, a board-certified neurologist and movement disorder specialist who joined MJFF in 2014. “Technology offers us so many routes to be together while socially isolating. We can do virtual chats, or we can just pick up the phone.”

These connections are crucial for people with Parkinson’s, who are at increased risk for many of the symptoms everyone has been experiencing lately — anxiety, depression, and feelings of loneliness and isolation.

Fox, an iconic Hollywood actor, established the foundation that bears his name in 2000, two years after publicly disclosing his Parkinson’s diagnosis at the age of 29. The foundation, headquartered in New York, says that 88 cents of every dollar it raises goes directly to research for Parkinson’s.

As MJFF continues to monitor the COVID-19 pandemic, it will be updating the Parkinson’s community via its COVID-19 Resource Hub, which includes access to webinars live and on demand.

“We at the foundation are offering ways to be with others during this time, whether it’s through Facebook watch parties or sharing through hashtags together while at home,” said Dolhun, who has created a number of tools and resources for patients including the Ask the MD series of blogs and videos, guides for living well, and Parkinson’s 360.

Staying active also is key to maintaining health during the current pandemic, Dolhun said.

“This is so important for overall well-being, but it’s really critical for people with Parkinson’s disease,” she said. “We’ve had to become creative and flexible during this time, by taking classes on line and doing good exercise routines. There’s really been a shift in thinking on staying active, just by going for a walk outside and getting fresh air.”

Turn off the news

Even if that’s not possible because of quarantines and lockdowns, Dolhun said, “you can walk in your own apartment, stand while you’re working, or walk while you’re taking conference calls.”

Equally important as staying connected and active is living in the present.

“Meditation is not for everybody,” Dolhun said. “There are many ways to be mindful. Try to focus on this present moment, what we can do instead of what we can’t do — and being in this moment instead of thinking 27 steps ahead.”

MJFF expert Rachel Dolhun, MD, suggests limiting exposure to news. (Photo by Larry Luxner)

Staying glued to the television, waiting for the latest numbers on coronavirus infections and deaths is not particularly healthy.

“Too much news can lead to anxiety. There’s a lot of news coming out nonstop, and it’s important to stay updated,” she said, warning that there comes a point when enough is enough. “You do not have to be constantly inundated with news. Just look for credible sources.”

Unfamiliar sleep patterns also can lead to anxiety in Parkinson’s, research shows.

“Many people with Parkinson’s were already having problems falling asleep or staying asleep even before coronavirus,” she said. “Now that our routines are off, we’re at home all day. That’s why it’s especially important for people with Parkinson’s to keep a routine, even if they don’t have the same schedule as before.”

Dolhun graduated from the University of San Diego with a bachelor’s degree in biology, got her medical degree from Wake Forest School of Medicine in Winston-Salem, North Carolina, and did her neurology residency and movement disorders fellowship at Vanderbilt University in Nashville, Tennessee. Before joining MJFF, she had a private practice in Charlotte, North Carolina.

Foundation plans COVID-19 survey

MJFF has raised more than $900 million for research about Parkinson’s disease. Since 2017, it has conducted an online study, Fox Insight, which seeks to learn more about life with Parkinson’s by capturing the experiences of people with and without the disease.

Participants complete study visits — online surveys about health, symptoms and lifestyle factors — every 90 days. Fox Insight is open to any English speaker 18 or older, and is the world’s largest Parkinson’s patient-reported outcomes group, with 46,600 participants.

Bastiaan Bloem, neurologist
Dutch neurologist Bastiaan Bloem, MD, is one of the world’s top experts on Parkinson’s disease. (Photo by Larry Luxner)

In coming weeks, the foundation will launch a Fox Insight survey that specifically focuses on the impact of COVID-19 on people with Parkinson’s.

In fact, several leading experts worry that the global COVID-19 pandemic could have immediate, detrimental effects on Parkinson’s patients.

Dutch neurologist Bas Bloem, MD, a professor at Radboud University Nimegen Medical Center in the Netherlands, recently told Parkinson’s News Today that while Parkinson’s patients do not have a higher risk of attracting coronavirus, “we do think they are more at risk of experiencing the severe complications” of this disease.

“We know, for example, that exercise suppresses the symptoms of Parkinson’s, whereas this crisis forces people to stay at home. And it also leads to chronic stress — and Parkinson’s patients are particularly susceptible to the negative effects of stress,” he said.

Bloem and a colleague, Rick C. Helmich, MD, outlined those concerns in a commentary article, “The Impact of the COVID-19 Pandemic on Parkinson’s Disease: Hidden Sorrows and Emerging Opportunities,” that was published April 3 in the Journal of Parkinson’s Disease.

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Swarm of the Waahdeefs

what ifs, shut in, toilet paper, serenity, laughter

Steam from my hot chocolate fogs my glasses. I almost miss Neo’s opening comment: “How goes the move to St. Louis?”

I wipe my glasses. “We had to speed up the whole thing because of the pandemic. Trying to prepare for every possible concern during these unstable times has turned my brain to mush.” Putting my glasses on, I feel Neo intensely listening. “I got overloaded and then …”

Neo interrupts, “Those are the classic symptoms of being swarmed by waahdeefs.”

“Waah-what?” I ask.

Neo continues, “Oh yeah, they can be real nasty. They sneak into your mind and swirl around, wielding stingers of confusion and …”

My turn to interrupt. I shout, “Neo!”

“Oh yeah, sorry,” Neo stammers. “A waahdeef is that ‘what if’ worry statement. When there is a swarm, it gets really messy — like a cerebral meltdown.” Neo’s grins and says with confidence, “You know, what we need is a large can of waahdeef bug spray.”

Laughing, I say, “I think I’ve got just the thing. Waadeef’s hate certainty. I don’t have worry statements like, ‘What if the sun doesn’t come up tomorrow?’ because, with a fair degree of certainty, I am sure the sun will come up tomorrow. What stimulates waahdeef swarm behavior are not things that are certain, but rather things that are uncertain, like what is going to happen to us in the COVID-19 crisis.”

Parkinson’s patients have the waahdeef swarm effects also. Especially when they get that first diagnosis. The swarm returns with new symptoms or progression: “‘What if I can’t do something I used to be able to do? What if I need more help from family or friends? What is the next thing that is going to happen to me?’”

Neo clears his throat. “So you’re saying is that if we can believe in the certainty of a future outcome, then it no longer becomes the target of a waahdeef swarm? Like using a can of bug spray?” Neo laughs.

“That’s exactly right Neo, and that bug spray is important when the locusts are upon us.” I sound like a general leading troops to battle.

Neo jumps to attention. “OK, general. Tell me how I can get my own can of bug spray “

Here is a list of the ingredients:

  • practice the 4S COVID-19 safety program
  • focus on what you can do (don’t think about and don’t talk about those things you cannot change)
  • show up prepared for what you can do; remain motivated and engaged
  • practice wellness behaviors including exercise, threshold management, and meditation
  • keep the fear in check, knowing that the world has, and will continue to, create new ways of successfully navigating the COVID-19 crisis

Neo jumps in. “So, the bug spray instructions are to mix all that up and spray in the room while I’m in lockdown? Then, hope for the best?”

“Yeah, that’s about it,” I answer frankly.

Later that day Neo returns and says, “I tried it and it helped a little. But there’s this one pesky, buzzing idea and it’s this: What if that one virus microbe that has survived the disinfectant onslaught manages to land on me? What can I do to stop it? There must be something I can do. “

“That’s a nasty one, Neo. That’s the groundless variety of waahdeef. It’s really difficult because nothing is more uncertain than groundlessness.”

Neo, now showing a higher degree of frustration: “Are you telling me there isn’t anything I can do to get rid of all these nasty waahdeefs? “

“All is not lost, Neo,” I say with assured excitement. “This variety of waahdeefs has a short lifespan. We just need to sit and wait calmly until the cycle is over. “

Neo collapses on the sofa. “Do all I can to keep myself and family safe. Keep the wellness program going. Be patient, relax, and wait until the waahdeefs are dead. Thanks … that helps.”

***

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 Swarm of the Waahdeefs appeared first on Parkinson’s News Today.

Weighted Blankets Are Popular Sleep Aids, So I Bought Two

weighted blanket

Sleep.

It used to be something that came to me as natural as breathing. Now, it eludes me, and I struggle to get the rest my body needs.

My body is exhausted, but my mind does not agree. I think about what I should have done that day but didn’t get to and what I need to do tomorrow. Something always keeps the hamster running on the wheel.

Eventually, my mind cooperates, but sometimes it is too late. My legs wake up, they “jig and jive,” and anxiety follows. Sleep and anxiety are not friends. They do not peacefully coexist.

After reading good things about sleep and weighted blankets, I purchased one. Weighted blankets are promoted as having calming and beneficial effects for ADHD, autism, and many other conditions including Parkinson’s. My hope was to find relief for my restless legs and the anxiety that comes with them.

If you are unfamiliar with weighted blankets, they are weighted with glass beads, plastic pellets, or other fillers. The blanket provides gentle pressure over your body. In a way, it feels like a hug. The effect can be both comforting and calming.

The concept sounds simple. However, I quickly discovered a few things with my first blanket that led to the purchase of my second blanket.

All weighted blankets are not created equal and they are not “one size fits all.”

So, how do you know which blanket will work best for you?

Let’s start with weight. Experts recommend a blanket that is approximately 10 percent of your body weight. Adjust the weight to feel comfortable. For example, if you find it difficult to roll over or if you feel trapped, a lighter blanket may be better for you.

Different designs also are available. The design and stitching are important. Look for a blanket designed with beads sewn into separate sections. This will distribute the weight evenly.

Some blankets, like my first one, appear to have separate sections but they are not sewn shut. The beads and the weight become concentrated in one area. The blanket becomes difficult to maneuver and uncomfortable. Like me, you will find yourself buying a second blanket.

Once you find the right blanket, it can be a great sleeping aid for the entire night or for a power nap. However, be patient. It takes some time to adjust to the weight.

In the beginning, I only covered my legs. Each night, I pulled the blanket a little higher to cover more of my body. I was completely under the blanket in a few days. I was comfortable and benefiting from the gentle pressure it provided. The blanket has become an essential tool in my Parkinson’s toolbox.

From my personal experience, there is one last piece of advice worth mentioning. Stand next to the bed, spread out the blanket, crawl in, and cover up. Attempting to spread out the blanket while sitting in bed may result with both you and the blanket on the floor.

***

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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Fighting Fear Ahead of Another Surgical Procedure

surgery

I have had several surgeries in my lifetime but have never fretted over them beforehand. I think that’s because the procedures were all to deal with my Parkinson’s disease, and I explicitly trusted the doctors in each situation.

As I write this, I have another surgery tomorrow, and I must admit that I am a bit nervous. Not because I don’t have confidence in the doctor who will perform the surgery, but because I haven’t had a surgery that didn’t involve my brain. You’d think I have that backward. 

I am going in for something unrelated to my brain and I’m more nervous than I was about having a seven-hourlong brain surgery. And I’m pretty sure I know why. 

Several years ago, I came across a story about Haldol (haloperidol). For those of you who don’t know (and most people don’t), Haldol is an antipsychotic medication used to treat schizophrenia and other mental or mood disorders. The story I happened upon was about a man who lost his father-in-law to what he believed to be negligence by hospital staff after they administered Haldol to him, a Parkinson’s patient. (You can read about it here.)

After reading about the medication’s side effects, I gathered as much knowledge as I could about Haldol and how it affects those who have Parkinson’s. I have tried to educate those who read my blog and my column here at Parkinson’s News Today. I began receiving messages from others who had similar stories. They were heartbreaking enough to unnerve anyone battling Parkinson’s.

This is what unnerved me: The possibility of receiving a medication that could leave me like a vegetable is real. And that is what makes being prepared for a hospital visit extremely important, especially if you are a Parkinson’s patient.

The flip side

There is a flip side to all of this worrying, and it is called success. We register for our surgeries, fill out our questionnaires and HIPAA forms, pay our fees, and stand at the waiting room door that separates us from our physicians and the procedures.

Eventually, we are ushered through the doors, down the halls, and into the rooms where we are prepped. And then we go, hoping for obstacle-free experiences within the four walls of the surgery room.

Fast-forward, and there I was, past all points of progress and ready for surgery: IV inserted, vitals taken, papers signed, rolled into the operating room, and bam! Out like a light. And just like that, I was awake again. That is when I realized that I had found it: success. 

No bad meds were administered, no hurdles were thrown in front of me while I lay on the cold table. I realized then that I had been granted another day to pull up my bootstraps once again, move forward in faith, and trust that age-old promise that all things work together for my good. For that, I am truly grateful.

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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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Cannabidiol Found to Reduce Anxiety-induced Tremors in Parkinson’s Patients, Study Shows

Cannabidiol (CBD)

A single dose of cannabidiol (CBD) can decrease anxiety and tremor strength in people with Parkinson’s disease during situations known to induce anxiety, such as a public speaking exercise, a study found.

The results of the study, “Effects of acute cannabidiol administration on anxiety and tremors induced by a Simulated Public Speaking Test in patients with Parkinson’s disease,” were published in the Journal of Psychopharmacology.

Cannabidiol — and the different molecules found in the Cannabis sativa plant — has attracted much attention since its widespread legalization. One of the main components of the plant, CBD does not have psychoactive properties, unlike tetrahydrocannabinol (THC), the main hallucinogenic component of cannabis.

It does have anxiolytic, or anxiety-reducing properties.

Given that, and due to its anti-inflammatory and neuroprotective properties, CBD has been studied for use in a number of conditions, namely epilepsy — where it is approved to treat certain types of the disorder — inflammatory diseases, cancer, psychiatric disorders, and neurodegenerative diseases.

CBD also has been tested in a number of anxiety studies and has previously been shown to decrease anxiety in healthy volunteers. Now, researchers tested the potential of CBD as an anti-anxiety treatment for people with Parkinson’s.

In addition to motor symptoms, such as tremors and freezing, Parkinson’s also is characterized by several non-motor symptoms, including anxiety. Around 67% of people with the neurodegenerative disease have reported this symptom, with anxiety-inducing situations aggravating their Parkinson’s tremors.

The anxiety treatments currently available, such as selective serotonin inhibitors — the most commonly prescribed antidepressant — and benzodiazepines, have side effects which aggravate Parkinson’s symptoms.

The researchers say better options without side effects are needed for treating anxiety, especially in the elderly and in this particular patient population.

So far, cannabidiol has been described as safe, and seems to have very few side effects, making it a good prospective treatment option. However, scientists say more studies are necessary to evaluate CBD, as it is crucial to confirm that the treatment does not interact with other parkinsonian medications.

To learn more, a team of Brazilian researchers conducted a clinical trial in which 24 people with Parkinson’s disease, mean age 64.13 years, took a single, 300 mg dose of CBD or a placebo 90 minutes before being asked to do a public speaking test. This is a common way of inducing anxiety in an experimental setting. The participants had to give a talk on a subject such as “transportation in their city” and were recorded while doing so. They were told that the videos would be analyzed by a psychologist.

The participants all reported the onset of Parkinson’s symptoms after age 50, and had a mean disease duration of 6.5 years. Most individuals were taking levodopa (19 patients) as well as other medications.

All of the patients took part in two experimental sessions within a 15-day interval, during which their blood pressures, heart rates, tremors, and moods were measured at different time points.

The scientists found that the amplitude of tremors was significantly lower in patients who received cannabidiol compared with placebo — and CBD also significantly reduced the anxiety level. There were no differences in any of the other measurements between the CBD and placebo groups.

“These observations suggest that CBD may be an alternative treatment for patients with PD and anxiety,” the researchers said.

CBD’s mechanism of action is not well-understood, since it has many different targets in the brain. Two targets, serotonin 1A receptor (5-HT1A) and cannabinoid receptor type 1 (CB1), have previously been linked to anxiety. As such, the researchers said the interaction of CBD with 5-HT1A and CB1 could in part explain how the compound might be working.

The investigators noted that the study has several limitations. One was its small size — only 24 people participated, 22 of whom were men. In addition, the speaking test was done just 90 minutes after taking CBD. More time might have been needed to see the full effect of the treatment, they noted. The study also lacked active comparators for CBD, such as other anti-anxiety therapies.

Despite these drawbacks, the initial results are promising enough to warrant further investigation into how CBD works in the brains of Parkinson’s patients, the researchers said.

“This is the first study that shows the anxiolytic effects of CBD in patients with PD and its ability in attenuation of the tremor amplitude in anxiogenic situations,” they said.

The investigators suggest future experiments should include more patients and different doses of cannabidiol, for example, having participants take CBD every day instead of in a single dose. Further research is necessary to confirm the calming effects of CBD and what quantity and frequency is optimal for the best results in people with Parkinson’s, they said.

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