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Harnessing the Power of Music

Listening to music

A proud, black piano stands in my parents’ living room. It’s the foundation of our home. From behind the sleek mahogany panels, fury, sadness, and happiness express themselves without judgment. My operatic brother sings his troubles away. My mom, a lifelong piano teacher, often alludes to the power of music because it isn’t just a creative outlet. It’s a mood-setter. It establishes rhythm and dance. Therapists use it to explore cognitive and emotional turmoil. And it also facilitates social change.

“Powerful songs have always been the engine behind the greatest social movements — it is the marching soundtrack that unites the people and gives them focus and resolve, and it’s not limited to the U.S.,” Barrett Martin writes in HuffPost. “In 1970s Nigeria, Fela Kuti invented Afro Beat music as a way to protest the oil company regime of Nigeria. His song ‘Zombie’ became a global hit that railed against Nigeria’s military dictators. In South Africa, the indigenous Mbatanga music helped bring about the end of apartheid and it spread a message of peace and reconciliation in that nation.”

If music is powerful enough to inspire entire chapters of history, what else is it capable of doing?

Parkinson’s disease and music

Music is powerful for a number of reasons; listening to it releases dopamine and serotonin – neurotransmitters that decline in Parkinson’s patients. But a study published in 2008 suggests that learning how to play an instrument also develops motor skills and reasoning abilities. Children who learned to play an instrument exhibited more advanced motor and reasoning skills than children who didn’t learn to play an instrument.

That same study states that, “Parallels between music and language have been used to support the hypothesis that music training may strengthen verbal skills.” Since music may help to develop speech patterns, exploring sound offers a tangible solution to verbal decline. Changes in speech occur with the progression of Parkinson’s. But active participation in music challenges the progression of Parkinson’s disease. Rather than observing consistent loss, Parkinson’s patients can explore music as a source of development.

Singing and Parkinson’s disease

If you’re feeling particularly enthusiastic about singing, consider joining a Parkinson’s singing group. In the same way that music changed history for entire communities, Parkinson’s singing groups offer a sense of camaraderie that’s powerful in itself. Producing endorphins in those who participate, singing is both cathartic and constructive. And it even boosts the immune system.

A small 2012 study in Norway found that group music therapy positively affected five of six Parkinson’s patients. While speech patterns didn’t noticeably improve, a decline in speech also didn’t occur during the study. This suggests that group singing may slow the progression of speech-related outcomes for Parkinson’s patients.

Singing encourages focus on breath support, diction, volume, and emotion. Vocal strength and articulation can challenge many Parkinson’s patients. But singing reinforces some of the functions that otherwise degrade.

Moving forward

Parkinson’s disease is degenerative and continuously heartbreaking in its thievery, but there are ways you can use music to fight its progression. Whether you’re interested in listening to records, picking up an instrument, or using your good ol’ vocal cords to bring happiness into your life, music offers incredible benefits to those who explore 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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I’m Learning Not to Make Assumptions

assumptions Journeying through Parkinson's

Sherri Journeying Through

I have a bad habit of assuming things. You would think (an assumption) that I would have learned by now, but no. 

Take today for example. 

My husband and I were at the mall this afternoon people-watching in front of the coffee shop. I watched through the glass doors as a dad bent over and tied his approximately 11-year-old son’s shoe. Attached to this boy’s belt was a knife sheath, which held a knife with about a 6-inch blade (another assumption). 

I told my husband that you’d think if that boy was old enough to be in possession of a knife like that in public, he could tie his own shoes. Then the dad stood up and the boy turned to face me head-on, and that’s when I saw it: the broken arm. It’s hard to tie shoes with a broken arm. 

You’d think I’d have learned by now, but again — no.

However, I am getting better. I’ve been praying to be redeemed from my habit of assumption, but it’s tough. I have stopped drawing conclusions right away. I can hold onto thoughts that once ran rampant, and instead, I am trying to get the whole picture, or I turn away from the “picture” entirely.

Having Parkinson’s has helped me learn this lesson. 

We can walk funny. We can talk funny. We can move all sorts of different ways. We can stop in the middle of a sentence or stop in the middle of a walk and have to be jump-started by the help of another. We know what’s happening, but the strangers who watch us most likely haven’t a clue.

They may assume we’re a tad bit tipsy, forgetful, senile. Any number of things could account for our odd behavior. Because I act the way I do (tremors, dyskinesia, dystonia, masked face, etc.), I have come to see others differently. To look past the initial assumption and see the situation for what it really is: not a spoiled child, but one with a broken arm. 

Now I need to figure out why he’s got a 6-inch knife in a leather sheath hooked to his belt. I don’t want to even think where my assumptions could take me with that one.

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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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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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‘Bananas and Beans, not Burgers’: High-Protein Meals and Levodopa

protein

No one told me that breakfast bacon, ham, or sausage would make me feel awful!

I had seen my off-periods worsen after a heavy meat meal, but I shrugged it off as “just a bad off-period.” Now, after being on levodopa for five years, I am positive that animal protein meals are a serious issue. Overlapping a high meat meal with levodopa can result in not just an off-period, but also one that lasts much of the day.

“Bananas and beans, not burgers” is the mantra to remind me that diet is very important in the development of a rehab plan for folks with PD. I am not a nutritionist. I am writing from the perspective of a PD patient warrior and rehab clinician.

Research suggests that changes to your diet could help alleviate some symptoms of your PD. The American Parkinson Disease Association (APDA) notes that levodopa crosses the wall of the small intestine via molecules in the intestinal wall that transport amino acids. When dietary protein (beef, chicken, pork, fish, eggs, nuts, and dairy) is also present in the small intestine, fewer transporters are available for levodopa to use. We may experience the “protein effect” when the medication competes with a high-protein meal.

One of the most compelling statements in a 2014 study published in Frontiers in Aging Neuroscience is that a “growing body of evidence suggests that nutrition may play an important role in PD.”

The study “Irregular gastrointestinal drug absorption in Parkinson’s disease” in the journal Expert Opinion on Drug Metabolism & Toxicology states that levodopa transit time in the small intestine is approximately three hours. Therefore, gastric emptying is a major determining factor for the onset of symptom relief. When PD delays gastric emptying, it has the potential to cause motor fluctuations, known to us as off-periods.

Research also shows that with your microbiome (the microorganisms in your body), a relationship exists between Parkinson’s disease and improved gut health. In “Parkinson’s disease and bacteriophages as its overlooked contributors,” published in the journal Scientific Reports, George Tetz and his colleagues examined the viruses that live in the gut, as well as the role the microbiome may play in Parkinson’s disease. According to Parkinson.org, “this has sparked the idea that we might be able to improve the symptoms if we change the microbiome through diet or other ways. … These bacteria play a role in the processes that produce dopamine and affect the intestine’s ability to absorb.”

Like many aspects of Parkinson’s symptoms, the protein effect is highly variable. Some people do not experience it at all. Others are extremely sensitive to protein’s effect on medication absorption. This diet concern was presented at my local PD support group, and the group’s PD warriors and caregivers agreed almost unanimously with having experienced or witnessed the adverse effects.

It typically becomes more of an issue as PD progresses. The APDA suggests that if someone experiences the protein effect, two potential strategies might help. One is to refrain from eating protein during the day, eating it at night instead, when the medication’s effect is less critical. The second is to distribute protein intake evenly throughout the day so that medication absorption is enhanced during that time.

The solution I have found that works best for me has two parts. First, I space the levodopa dosing so that it occurs between meals to minimize absorption issues. Second, I eat the day’s moderate meat meal at lunch, not dinner or breakfast.

Reducing meat in your diet may be beneficial not just to levapoda absorption. An amazing study on diet and overall health by Thomas Campbell and T. Colin Campbell, called “The China Study,” clearly showed that decreasing meat intake is a good change for all of us. Bananas and beans, not burgers.

What diet changes have you found to be helpful? Share in the comments below.

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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 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.

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The ABCs of Parkinson’s: ‘M’ is for Musings on Mumbling

mumbling

Sherri Journeying Through

If you asked me which symptom of Parkinson’s disease (PD) is the most annoying, I may reply, “My soft voice.”

I have always had a soft voice. Perhaps I have always had Parkinson’s disease! I have had a diagnosis of the disease a much shorter amount of time than when my symptoms initially began, in high school. It wasn’t until after my diagnosis, however, that people began telling me to, “Speak up!”, “Quit mumbling,” or, “You talk too softly.”

Too many times since my diagnosis, I have replied to those statements with my own feelings of frustration. 

“I am speaking up!” I will state.

“Well, I can’t hear you. Maybe you should yell,” they have retorted.

“I am yelling!” I scream, unaware that the decibel of “yelling” I feel I am projecting in volume is nowhere close to what they hear.

Since I have started meeting with a group of other people with Parkinson’s for a boxing class, I have seen a different side to the mumbling factor.

I often would ignore those who would tell me I am speaking too softly. I would mutter to myself that perhaps they are the ones who need some help hearing. But then, little by little, I was beginning to feel as if people were just downright ignoring me when I would say something. Then I started boxing and realized there are other people in the class similar to me. People who trip. People who have tremors. People who mumble.

Mumbling? Saying something quietly in such a way that it makes it difficult for others to hear you. Usually, it’s intentional. The hard thing for people with PD? We are perceived as mumbling when, in fact, we think we are talking normally. We truly do believe that we are talking loudly enough. Unfortunately, that often is not the case.

A few people with PD have explained it as:

“No one listens to me anymore.” –Shirley

“… my struggle with my voice has been the most challenging, caused me more heartache and frustrations.” –Mike

“People talk over me as if I am not talking.” –Mary

Parkinson’s disease can cause a soft voice/speech (known as hypophonia), which makes it difficult for others to hear those who experience it. Not all people with PD will struggle with speech difficulties, but for those who do, it can be extremely frustrating and can cause embarrassment, leading you to avoid socializing with others. 

If you have speech problems while living with Parkinson’s, you may want to look into the Lee Silverman Voice Treatment LOUD, a method that has shown improvements in voice and speech quality. In the meantime, sing. Loudly. It’s been known to help strengthen the muscles. And try to force yourself to speak loudly when talking. No mumbling. No muttering. No giving up. 

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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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Transient Cerebral Swelling a Common Side Effect of Deep Brain Stimulation, Study Suggests

brain edema DBS

Swelling of brain areas close to where the electrodes that deliver deep brain stimulation (DBS) are placed is a common and transient side effect of this treatment in Parkinson’s disease patients, a study suggests.

Long-term impact of this adverse reaction and potential related complications are still unknown and warrant further analysis, researchers say.

The study, “Peri-lead edema after DBS surgery for Parkinson’s disease: a prospective MRI study” was published in the European Journal of Neurology.

DBS is a surgical treatment in which thin wires are implanted in strategic brain areas (those that control complex movements) to deliver electrical impulses generated by a battery-operated device.

Studies have shown that DBS can be beneficial in treating a variety of neurological diseases, particularly Parkinson’s. DBS has been accepted as an effective therapy to reduce motor symptoms such as tremors, lower the necessary daily dose of medication and improve Parkinson’s patients’ quality of life.

The most common adverse events associated with DBS include hemorrhage, infection, and failure of the implant’s components. However, some studies have also reported rare events of cerebral swelling (edema) surrounding DBS electrodes a few days after the surgery.

To gain binsight on the prevalence of this complication, Italian researchers evaluated the progression of 19 Parkinson’s patients who had undergone DBS therapy.

Surgeries were uneventful in all patients, with no complications being reported. However, after surgery, two patients experienced small hemorrhages close to the placed electrodes without any other brain tissue alterations reported.

All patients were evaluated by magnetic resonance imaging (MRI) between days 7 and 20 after surgery.

Researchers found that all patients showed some degree of MRI signal alteration along the placed electrodes, which was consistent with edema. The analysis also revealed small symptomatic hemorrhage in four additional patients, raising the total number of hemorrhagic patients to six (31.57%).

Researchers failed to find any correlation between edema volume and patients’ age, gender, disease duration, or side of the brain in which DBS electrodes had been implanted.

Patients who had hemorrhages also showed tissue swelling on the side of the brain opposite the bleeding.

Most patients were asymptomatic, but six had transient confusional state — disorientation in space and time plus mild signs of frontal lobe dysfunction, which included disinhibition, inattentiveness, and slightly impaired speech with poor word retrieval. Patients did not show any new motor deficits after surgery.

Two symptomatic patients were treated with a short corticosteroid treatment, but no significant effect on symptoms was noted. Still, both patients recovered in two to four weeks.

At a mean time period of 40.64 days after surgery, MRI signs returned to normal values in eight  patients. Superficial edema was still detected in three patients. At follow-up, no patient had detectable bleeding around the DBS electrodes.

To further explore the prevalence of brain edema associated with DBS, the team retrospectively evaluated computed tomography (CT) imaging data of 77 patients who had undergone DBS surgery from January 2013 to February 2017.

Hemorrhage around DBS electrodes was detected in four (5.19%) patients and edema in six (7.78%) patients. In nine patients evaluated by CT scans on days 1, 2, and 3 after surgery, edema was present in two who also had hemorrhage, and another patient.

“Our prospective MRI study confirms that [transient] edema is a common finding in STN-DBS [subthalamic nucleus] implanted patients for Parkinson’s disease and that it is asymptomatic in most patients,” researchers said. “The reason of the extremely high incidence of our finding is likely due to the timing of imaging (average 10 days) from surgery.”

They stated their opinion that edema near the electrode sites “is a normal and constant finding in patients undergoing STN-DBS lead placement. Its recognition is biased mainly because it is mostly asymptomatic and also because of the lack of early routine MRI scans in DBS patients.”

The team suggested that to avoid overtreatment and complications, “no corticosteroid treatment should be administered to patients whose MRI shows … edema in the first 7 to 60 days from surgery.”

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Data Lacking on Link Between Genetic Mutations and Parkinson’s Symptoms, Review Finds

genetic mutations, symptoms

There is a substantial lack of data describing the link between the genetic mutations identified as inheritable causes of Parkinson’s — those that affect the SNCA, LRRK2, and VPS35 genes — and patient symptoms, a review study has found.

Despite this missing information, the researchers conducting the review were still able to make some determinations, including findings indicating that SNCA mutation carriers are younger in age at disease onset and have additional psychiatric symptoms, while VPS35 mutation carriers have a good response to levodopa therapy.

The study, “Genotype‐phenotype relations for the Parkinson’s disease genes SNCA, LRRK2, VPS35: MDSGene systematic review,” was published in Movement Disorders.

Parkinson’s disease, the second most prevalent neurodegenerative disease in the elderly after Alzheimer’s disease, is a complex, multifactorial disorder characterized by the gradual loss of muscle control, sometimes accompanied by cognitive deficits.

Previous studies have estimated that genetic factors may account for up to 34 percent of all Parkinson’s cases. More specifically, genetic mutations in the SNCA, LRRK2, and VPS35 autosomal genes (genes located on any chromosome other than sex chromosomes) are considered a cause of disease in up to 30 percent of all patients with Parkinson’s, depending on family history, age at onset, and population background.

“The International Parkinson and Movement Disorder Society Genetic mutation database (MDSGene) aims to systematically collect clinical and genetic information for movement disorder patients who have pathogenic mutations. In this study, we present a systematic MDSGene review and devote it to autosomal-dominant PD [Parkinson’s disease] across the three disorders, PARK-SNCA, PARK-LRRK2, and PARK-VPS35,” the researchers wrote.

The comprehensive, systematic review gathered information from 199 studies (54 on SNCA, 133 on LRRK2, and 12 on VPS35) involving a total of 937 patients (146 SNCA, 724 LRRK2, and 67 VPS35 mutation carriers) with inherited Parkinson’s disease attributed to 44 different mutations in these three genes.

“A major challenge for this systematic review was the degree of missingness of phenotypic [disease symptoms] data. Missing data not only affected non-motor signs and symptoms (NMS) of all patients, but specific information was even often unavailable for basic demographic information such as age at onset or sex or cardinal motor signs,” the authors said.

Despite the lack of data, the review managed to validate findings from previous studies showing that patients carrying mutations in the SNCA gene were more likely to develop Parkinson’s disease at an earlier age than those carrying mutations in LRRK2 and VPS35.

Pooled data also revealed that SNCA mutation carriers more frequently experienced psychiatric symptoms, while LRRK2 mutation carriers rarely had atypical symptoms of Parkinson’s disease. The researchers also found that VPS35 mutation carriers responded rather well to levodopa therapy.

“The most significant finding is the proportion of missing phenotypic data. … We propose to utilize MDSGene as the basis for the systematic collection of curated clinical and genetic information on inherited movement disorders as a solution to increase reporting of phenotypes for better genetic counseling and future gene-specific therapies,” the researchers wrote.

“To this end, the MDS Task Force on Genetic Nomenclature in Movement Disorders is drafting checklists that we propose should become the standard for clinical data reporting of individuals with movement disorders. Standard reporting of core features could improve the situation considerably,” they concluded.

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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.

Deep Fatigue Is More than Tiredness

deep fatigue

Fatigue is a symptom commonly associated with Parkinson’s disease (PD) and one I experience more often each year. The term “fatigue” alone does not do justice to the experience. It is too easy to relate fatigue to being tired or overworked, or to muscle aches after hard physical labor. I have had those experiences and none of them compare to PD-related fatigue. I’ve needed a new way to define this different level of fatigue. Thus, I have adopted the term “deep fatigue.”

Deep fatigue is different in its intensity and its incorporation of nonmotor symptoms. Deep fatigue involves every muscle, sometimes even involuntary ones. They are all tired and weak, and in my case, also in pain. If I have been exercising, then those muscles groups will have a higher level of pain. In deep fatigue, it is common for me to have pain levels at six or seven. (I associate level seven with spontaneous tears.) At the same time, emotions become much more intense, almost overwhelming, and difficult to manage. Mental energy is used to manage the pain and the emotions, leaving little energy for anything else.

My duration of deep fatigue is slowly increasing each year. Presently, my deep fatigue lasts between one to six hours. It’s like dragging a ball and chain during those hours.

These things seem to make deep fatigue worse:

  • Exercising too hard or too long
  • Eating too much animal protein, or too big a meal
  • Not resting when needed
  • Getting overheated and not hydrating
  • Being overly stressed
  • Being sick with a virus
  • Missing a levodopa dose

Obviously, avoiding the above is part of my rehab plan for dealing with deep fatigue. Rest and sleep are VERY important.

I am a very active person, but deep fatigue must be addressed with rest. Taking a day to rest is not in my nature. It makes me feel like a sloth. Yet, when deep fatigue hits me, the best remedy is to do just that — take the day off! I limit myself to one day of physical rest, very rarely two days (usually following some stressful event). I also find that the mind must rest with the body. Getting the mind to a quiet place is the practice of meditation, in whatever form suits the moment. At the height of deep fatigue, meditation can be very difficult, but not impossible. At times, it has taken me four hours to quiet my mind and body to get rejuvenating rest.

(Graphic by Dr. C)

But there is a caution here: Be wary of using rest as an excuse to procrastinate. In another column, I’ll address the link of scenario looping to set-shifting issues and difficulty initiating new tasks. Basically, getting off the sofa can be problematic if I stay there too long. Perhaps this seems contradictory to my history as a highly active person, but that is the nature of PD’s nonmotor effects. Once off the sofa, I make myself shift into a physical task, followed by a short rest and then some type of mental task. There is always some resistance to overcome to do this — to get off the sofa — but the rest is absolutely necessary to stop the deep fatigue.

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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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