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Apathy Most Evident in Patients’ Behavioral and Social Habits and Linked to Depression, Study Says

apathy and Parkinson's

Apathy is prevalent problem in Parkinson’s disease, but it is more evident in patients’ behavioral and social habits than in their emotional or cognitive ones, researchers in the U.K. report.

Their study, Differential impact of behavioral, social, and emotional apathy on Parkinson’s disease,” also linked behavioral and social apathy to a likelihood of depression in these people. The research was published in the journal Annals of Clinical and Translational Neurology.

Apathy is a well-recognized Parkinson’s non-motor symptom, although research rarely looks into the specific domains – behavioral, cognitive, executive, social, and emotional – it affects, or how exactly this symptom relates to depression and anhedonia (the inability to feel pleasure) seen in Parkinson’s patients.

University of Oxford researchers used the Apathy Motivation Index (AMI), a self-report measure of apathy validated in healthy individuals, to examine the multidimensional profile of apathy in Parkinson’s disease.

AMI categorizes apathy according to behavioral (the tendency to self-initiate goal-directed behavior), social (the level of engagement in social interactions), and emotional (ability to express feelings or affective responses) domains.

The team first evaluated AMI’s reliability and validity in Parkinson’s by comparing it with the Lille Apathy Rating Scale (LARS), a well-validated interview approach to assessing apathy in Parkinson’s and used in the development of AMI. Next, they evaluated if Parkinson’s patients exhibited differences in apathy domains compared to healthy controls, and if these domains associated with depression and anhedonia.

The study included 102 Parkinson’s patients (mean age 67.7; 79 men) and 147 healthy volunteers (mean age 66.1; 104 men). Mean disease duration was 6.6 years and Unified Parkinson’s Disease rating scale score was 27.0 (on a 0-199 scale, with 0 meaning no disability and 199 total disability). Neither patients nor controls had other neurological or psychiatric conditions.

Eighty-seven patients completed LARS, 84 (and 67 controls) completed the 14-item Snaith–Hamilton Pleasure Scale (SHAPS, a 14 item scale that measures anhedonia), and 80 (87 controls) completed the Geriatric Depression Scale–Short Form (GDS-15, a 15-item form to screen for depression in a variety of settings).

Results showed that AMI’s total score correlated positively with LARS’ overall score, demonstrating good construct validity, the researchers said. AMI also showed diagnostic accuracy in identifying 36 Parkinson’s patients with apathy. According to the authors, this means that AMI enables them to explore the various dimensions of apathy, while achieving an apathy prevalence rate consistent with existing studies.

Parkinson’s patients showed a higher total AMI score than healthy controls, indicating greater apathy overall. This result, as well as individual subscale scores, was not dependent on age, sex, cognition, years of education, disease duration, and levodopa doses.

Subsequent analyses revealed that patients had higher levels of behavioral and social apathy relative to controls, but not of emotional apathy. However, six patients showed deficits in emotional sensitivity and no deficits in the other domains.

Patients who were more behaviorally and socially apathetic were more likely to be depressed, a co-existing condition not observed in emotional apathy scales among patients. In healthy controls, higher the level of emotional apathy associated with lower the evidence of depression.

“This result suggests that different clinical approaches toward apathy in patients with PD compared to the general population might be needed,” the scientists wrote.

Patients with higher behavioral and social apathy also showed more evidence of anhedonia. Again, this was not found in emotional apathy. In the controls, only social apathy correlated with a reduced capacity to feel pleasure. No differences were found between patients and controls regarding anhedonia levels.

“Together our findings may help in guiding the development of more effective, selective treatments for apathy in [Parkinson’s] — including nonpharmacological ones aimed at different aspects of motivation — as well as assisting in our understanding of how apathy, anhedonia, and depression are related,” the researchers concluded.

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Source: Parkinson's News Today

What Is It Like to Live with Parkinson’s Disease?

to live

Sherri Journeying Through

I read a post recently in a Facebook group for people with Parkinson’s disease. The poster asked fellow group members what their response would be to others when asked what it is like to live with PD. Their answers are incorporated into the column.

Because Parkinson’s is so unpredictable, it is often hard to make definite plans, and you sometimes have to cancel at the last minute. People don’t realize how extreme the pain that comes with this disease can be, and how it can affect your day. You may look good, but you may feel entirely different from the way you look.

Pain has a way of wearing you out and sometimes bringing you down. It can lead to depression, and if you have Parkinson’s disease, you are already more susceptible to depression. It is important to surround yourself with others who are fighting the same fight. Parkinson’s is more than just a movement disorder, and the non-motor symptoms can often be more debilitating than the tremors or dyskinesia.

Stress increases the symptoms of Parkinson’s disease. However, symptoms come and go at varying intensities, so what may be causing you to have a bad day today may disappear tomorrow.

Don’t give up.

At times, not giving up is easier said than done, especially when you feel alone and abandoned. You may feel your friends and family have abandoned you, but it’s often more a case of them not understanding your new journey. It’s probably best to give those people in your life a free forgiveness pass and move on as you make new friends in the PD community who truly understand what living with PD is like.

Parkinson’s disease causes grief, but we can choose to live joyfully and intentionally in spite of what we feel has been taken from us. It is not a death sentence, and we must learn to readjust to our “new” life. And a new life brings new opportunities. As one person said, never lose hope and keep the faith because God is doing miracles every day and you may be the one He is working through to accomplish just that.

***

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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Source: Parkinson's News Today

Noticing the Signs of Parkinson’s Disease in a Loved One

signs

Sherri Journeying Through

If you were to go to a Parkinson’s disease website, you’d probably find a post on signs and symptoms of PD. The problem is that it can be hard to notice the signs if you are the one with Parkinson’s disease. You may have grown so used to the symptoms that you no longer take them as something serious.

I’ve written this post for loved ones who might have a sense that something isn’t quite right with the one they love. It is a list of early signs you may notice before they do, and how you might be able to help them.

Most people notice tremors as the first symptom. However, did you know that there are other signs that someone may have Parkinson’s disease? Signs that are often overlooked even by medical doctors?

On one of my earlier visits to my neurologist, I learned that one of the very first signs of PD is depression. There was no reason for me to feel down at times like I did. However, as there are many other reasons for a person to feel down or depressed, don’t jump to conclusions that your loved one has PD. For a confirmed diagnosis, several signs or symptoms must be present. A diagnosis of PD has never been made purely because a person is depressed (that I have heard of anyhow).

There is a list of symptoms a movement disorder specialist will look for in making a correct diagnosis of PD. Shaking can be caused by other things such as a head injury, resting tremors, overextending yourself physically, prescriptions you may be taking, hypoglycemia, and more.

I remember working in my garden several years ago and not being able to smell the flowers anymore, and I didn’t understand why. Can you guess why? Yep. Little Monster took my sniffer. Every once in a while my ability to smell will resurface, and I get a good whiff of something.

Does your loved one seem to be dragging one of their feet when they walk? Are they shuffling slightly? Has one of their arms lost its swing when they walk? Do they seem stiff in their movements? You have an objective perspective and may notice these things sooner.

No one who is happy or joyful likes to be asked, “What’s wrong with you?” That can happen with an early sign of PD known as the “masked face.” Why “masked” face? Because the facial muscles have tightened and people with PD have a harder time smiling or showing emotion.

Another symptom that I struggle with is my voice getting softer, making it hard for others to hear me. I had a soft voice to begin with, and when it got softer it made it more difficult to converse. Speech and vocal exercises can be done to strengthen the vocal cords if the problem is due to PD.

If you think someone you know might have early signs of PD, you might want to approach them as if they hadn’t noticed their symptoms. For example, don’t stare at them when they are shaking and ask, “Do I make you nervous?” Ask them if they’ve noticed that their hand shakes slightly. If they bring it to your attention, encourage them to have it checked out. If they are concerned and you act like it’s nothing, especially when you notice it, coupled with other signs related to early PD, they will feel silly and may think they are imagining things.

It takes several signs or symptoms to make a diagnosis of Parkinson’s disease, and this should be done by a neurologist, or better, a movement disorder specialist. Everyone lives with PD differently. Some are affected more by tremors, some by stiffness, some by pain, and some deal with it all.

If you are a person with PD, what were your first signs that “all was not well?” Did you recognize the signs first or was it a friend or family member?

***

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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Source: Parkinson's News Today

The ‘Little Monster’ Strikes Again

monster

Sherri Journeying Through

Serotonin, norepinephrine, and dopamine are all chemicals involved in regulating mood, energy, motivation, appetite, and sleep. Also, the brain’s frontal lobe, which is important in controlling mood, is known to be underactive in people with Parkinson’s disease. It’s no wonder that Parkinson’s patients may look sad. We have every right. Our brain is messed up! But looking sad and feeling sad are two different things.

People with Parkinson’s have two strikes against them in the “mood control” department (strike one is the frontal lobe being underactive). The second is that sometimes we can wear what people refer to as a “masked face.” A Parkinson’s patient can often have a lack of control over their facial muscles. So, naturally, because the majority of the public haven’t a clue what’s going on behind the face of a Parkinson’s patient, they assume the mood we’re in dictates our (lack of) expression. That assumption is not necessarily correct.

I have been asked several times, “Why are you so sad?” or, “Are you depressed?” or, “What’s wrong?” I’m not sad. I’m not depressed. Also, nothing was wrong until I was asked all those questions and then began wondering if maybe something actually is wrong. Maybe there was something I’m supposed to be sad or depressed over, and I just haven’t found out about it yet. A surefire way to get someone feeling low (at least, for me) is to tell him or her how “down” or depressed he or she looks (especially if it happens repeatedly).

I was sitting, listening to a friend the other day. As far as I knew, nothing had changed in my appearance while we chatted. Then she asked, “Are you OK? You look like you’re going to cry.”

I was fine. However, I then questioned myself. Was I fine? Why do I look so sad to her? Do I feel sad? Am I going to cry? Should I cry? Is there something to cry about that I missed? Maybe I should cry. How long should I cry? Alas, I concluded that, yes, I was fine and I wasn’t going to cry. I didn’t feel sad, but for reasons beyond my control, I looked sad to her. I chalked that up to Little Monster (PD) stealing my smile.

My movement disorder specialist once told me that in some cases of Parkinson’s disease, depression is the patient’s first symptom of the disease. Through the course of living with PD, depression may continue to be a struggle. Therefore, it is important that we optimally treat it. Sleepless nights, constipation, fatigue, freezing episodes, and more can contribute to depression, so if you’re struggling with these symptoms, address them.

Regular exercise is an important part of being at your best not only physically, but emotionally and mentally as well. It’s a proven fact that if we get up and get going, we’ll mentally feel better.

I once heard a story told of a doctor who was treating a patient for depression. Nothing seemed to help him. The doctor finally told his patient to go to a certain room each afternoon in the local hospital and read to the cancer patient there. Within a week, his depressed patient’s spirit (emotional well-being and mental outlook) had improved dramatically. By taking his eyes off himself and helping another, he was able to help himself.

There are many cases of depression that don’t fit neatly or easily into that theory of treatment, some due to chemical imbalances or injuries that are difficult to treat, even with the medications that are available. Sometimes there are just no easy answers for treating depression, and since each case is individualized, so are the treatments.

If you feel you tend to get depressed at times, or are feeling sad, think about joining a support group if you haven’t already done so. Start a hobby. Get involved in a recreational or social activity. Join a dance class. I’ve never met a depressed person who was dancing (or singing). Many effective and safe medications have been used to treat depression in people with PD.

Remember, as a Parkinson’s patient or caregiver, progress is being made every day toward new treatments. Until then, get the best treatment you can, tailored to you or your loved one. Your doctor can only treat you to the extent that you are willing to confide in them with what you are experiencing.

***

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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Source: Parkinson's News Today

Where Does Your Strength Come From?

column, perspective, shared advice, strength

Sherri Journeying Through

Grieving can, and often does, involve suffering, sorrow, sadness, hurt, depression, a feeling of affliction, and more. Grief is most commonly related to, and thereby put into, the categories of death and dying. However, grief covers so much more than our expression over the physical loss of a loved one.

I was reading tonight a verse from Nehemiah 8:10 that says, “Do not grieve, for the joy of the Lord is your strength.” Grieving can be an everyday part of life for someone with a chronic disease like Parkinson’s.

The first occasion to experience grief with Parkinson’s is upon diagnosis. You realize that from that moment on, nothing will ever be the same. There was no physical death, but eventually, you realize life from that day forward will be looked upon quite differently. Some days will be looked upon with grief in the form of sadness and sorrow while others will be met with smiles and laughter. Our path will not necessarily change, but we may face it with different emotions.

People who live with a chronic illness can be easily upset with life if they feel they’ve been dealt a hand they don’t deserve, or a hand they refuse to accept. This is a form of grieving in the way of anger and of asking why. Why me? Why this? Why now? (As pondered in the justified mind of an early onset Parkinson’s patient.) The why’s of life can leave a person grief-stricken, for they can be hard to make much sense of and be hard to understand (if not impossible). This can often lead to a deep sadness or depression, and we’ve learned depression is one part of the whole picture patients often have to deal with in Parkinson’s disease. You may be waiting for a good day to come, and if you’re fighting depression along with all the other challenges PD has to offer, that good day may not come any time soon.

Affliction appears in several different ways through Parkinson’s disease. Pain, tremors, lack of balance, difficulty swallowing — the list goes on and on. Each day, we encounter different “tests” this disease strikes us with. Will you lose your balance and actually fall this time? Will the tremors cause you to withdraw from the social activity you scheduled for the day? Will the pain rob you of doing what you love? Will going out to lunch embarrass you if you begin one your choking episodes? The list of afflictions doesn’t end there. We can feel slightly pricked or punched hard in the gut, depending on the severity of the test. It’s a state of misery that leaves you feeling helpless, sometimes hopeless. And hopelessness is such a dark place to be.

But … there is hope. I started this out with a verse that I had read earlier today. “Do not grieve, for the joy of the Lord is your strength.” It’s not always easy to abandon grief as our companion. Life as we once knew it has changed; some days replaced with deep sorrow over what we have lost or may lose. Anticipation has been replaced with anxiousness and fear. Fear of the what-ifs. Borrowing trouble from tomorrow. That’s what the what-ifs are made of. Tomorrow’s unguaranteed trouble.

Instead of “what-iffing” ourselves into depression and sorrow, let’s learn to allow joy to be our strength (the Lord’s joy is mine). Let’s replace sadness with hope, sorrow with thanksgiving, grief in its entirety with trust. Joy will build us up through this trial of life called Parkinson’s disease and keep us from falling into the abyss. And joy is so much better, don’t you think?

***

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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Source: Parkinson's News Today

My Struggles Worsen Despite Natural Treatment Experimentation

struggles

My body does not feel right. What am I going to do about it?

What has happened to me?

My quality of life was deteriorating due to my neurological issues. Along with poor fine motor skills on my left side and slowness of movement, I was constantly fatigued. This was a fatigue that no amount of quality sleep could ever satisfy. Additionally, I had internal tremors (not visible to the naked eye, but I always felt so weak and shaky). I thought for sure there must be some kind of “natural” solution to help cure what ailed me — one that did not involve prescription drugs.

My initial approach was to go to physical and occupational therapy and to continue my exercise regimen (weights, yoga, cycling, walking). This plan did not seem to slow disease progression or alleviate my symptoms. My depression and lack of motivation (other Parkinson’s disease symptoms) were also hindering me.

I can’t fight this alone, so drugs are an option

In March 2016, I finally agreed to try Azilect (rasagiline), a prescription medication. Two weeks later, my symptoms had not improved and I felt worse (dizzy and nauseous). So, off that medication and on to the next one, ropinirole. This time, it only took a few hours on the medication for me to become extremely sick with vomiting and a pounding headache. I immediately discontinued that medication.

Both my neurologist and primary care physician thought I should focus on treating my depression symptoms with a prescription medication. In August 2016, I tried Viibyrd (vilazodone HCI), an antidepressant. Within a few weeks, I was suffering from intense, gory nightmares every night with no improvement in my symptoms. At this point, I decided my PD symptoms may not be such a bad thing, and I refused to try any more medications.

I can’t fight this alone, but drugs are not an option

In October 2016, I attended a week-long workshop that focused on a plant-based diet. My diet needed a serious overhaul. The time was right to see if changing my eating habits would make a difference in the quality of my life. I was already a vegetarian, but I still loved my dairy products. I also loved sugar, pasta, and bread. These food items are known to potentially cause inflammatory responses in the body. Also, I have read that the neurodegeneration observed in PD is accompanied by inflammatory processes. If I added these two theories together, I believed a change to a gluten-free, no-sugar-added, vegan diet might help my PD symptoms.

A holistic doctor at the plant-based diet workshop I attended suggested I look into the Hinz Protocol for treating my PD. Dr. Marty Hinz developed an amino acid therapy that utilized natural dopamine powder from the Mucuna pruriens (velvet bean) plant in conjunction with other amino acids. I found a neurologist in New York City who endorsed this approach. After I returned home from the workshop, I maintained the strict diet and struggled with the Hinz Protocol. I say “struggle” because I suffered a lot of nausea. The doctor had to repeatedly adjust the dosages for the amino acid capsules and Mucuna pruriens powder to attempt to eliminate nausea and get symptom relief. Also, the cost of this protocol was hundreds of dollars per month and was not covered by insurance. I could handle the cost if my stomach had relief and my PD symptoms improved. However, that was not to be. After six months, I discontinued the Hinz Protocol.

The losses and the adjustments

I was starting to get very good at making adjustments when a PD symptom would impair me in some way. As an example, I find it difficult to put my coat on with my left sleeve first, so now I put my coat on with my right sleeve first. Or, since I can no longer feel where to put in my pierced earrings, I just make sure I have a mirror handy to see what I am doing. While waiting on a cashier’s line to check out, I make sure I have my money ready so I am not fumbling around in my purse and holding up the line. Wearing satin pajamas makes it easier to move around in bed at night. Being mindful of all my movements is critical so I do not trip, walk into things, or let things fall through my hands.

If my PD does not progress any further, I feel I can deal with the losses it has thrust upon me thus far. However, at times when I wake up in the morning, I think to myself, “What simple task will elude me today?” PD is a disease of loss, the loss of some of the most, mundane things in life many of us (including myself) take for granted. These include:

  • Holding a purse or newspaper firmly under the arm
  • Folding laundry
  • Tying shoes
  • Buttoning a shirt
  • Putting on a seat belt
  • Zipping a jacket
  • Opening a package
  • Cutting a salad

These are mindless tasks everyone does almost every day. Many of us with PD can no longer perform these daily rituals without assistance. If PD has not totally disabled us, some of us may still complete the task unassisted, but it requires intense concentration and focus on our part. It is almost as if we have reverted to being a child again.

Still struggling

It is now mid-2017. I continue to struggle with my worsening PD symptoms, and I am still not on any prescription medications.

All the “snake oil” solutions online make it even more difficult to find relief from my symptoms. On more than one of my PD-related blog posts, some unscrupulous individuals have responded with comments about the great herbal or vitamin supplement that has “cured” their PD. There are so many scammers out there, people and companies that prey on those who are so desperate for relief. I think I can speak for many of us with PD when I say we want to believe there is one thing that can help our symptoms or cure our disease, however, it is so difficult to separate what works and what doesn’t work.

Although I continue to exercise, meditate, and maintain my vegan diet, I fully realize I need more help.

Stop the roller coaster — I want to get off!

***

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 My Struggles Worsen Despite Natural Treatment Experimentation appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

Parkinson’s Disease Shares Brainwave Abnormalities with Other Neurological Disorders, Study Finds

brainwave pattern

An abnormal brain activity pattern could be a common link between Parkinson’s disease, neuropathic pain, tinnitus, and depression, an international research team suggests.

The brainwave abnormality is similar in all these disorders but occurs in different regions of the brain. This discovery could lead to therapies that target all four conditions, the investigators said.

Findings were published in the study, “Thalamocortical dysrhythmia detected by machine learning,” in the journal Nature Communications.

Whether a person is awake or asleep, moving or thinking, the brain produces specific brainwave patterns that represent, to some extent, how the brain works.

Researchers proposed, back in 1996, that specific oscillations in these brainwaves could be common to several neurological diseases, including Parkinson’s. This theory — called thalamocortical dysrhythmia, or TCD — suggests that patients with these conditions have a drop in brainwave frequency in neurons of the thalamus, and alpha waves are replaced by theta waves.

Alpha waves inhibit other neurons in the thalamus from firing, having a sort of muting effect in the brain. The loss of these waves allows neighboring cells to be more active, and the thalamus becomes hyperactive.

To confirm the TCD hypothesis, Sven Vanneste, PhD, an associate professor in the School of Behavioral and Brain Sciences at the University of Texas at Dallas, and his colleagues used a computer-based approach to map the major brainwave patterns of people with Parkinson’s, neuropathic paintinnitus — the perception of ringing or buzzing in the ears — and depression.

The study included 541 individuals, including 264 healthy volunteers, 153 patients with tinnitus, 78 with chronic pain, 31 with Parkinson’s, and 15 with major depression.

Using electroencephalography (EEG) data, the computer model revealed that all patients had equivalent changes in brainwave activity. However, depending on the disease, these alterations appeared in different regions of the brain.

For patients with tinnitus, brainwave abnormalities were identified in the auditory cortex, whereas chronic pain patients had these disruptions in the somatosensory cortex. Parkinson’s disease affected the motor cortex, and depression patients had brainwave abnormalities in deeper brain layers.

“We fed all the data into the computer model, which picked up the brain signals that TCD says would predict if someone has a particular disorder,” Vanneste said in a university news article. “Not only did the program provide the results TCD predicted, we also added a spatial feature to it. Depending on the disease, different areas of the brain become involved.”

While more studies are needed to validate these results, the findings seem to validate “TCD as oscillatory mechanism underlying diverse neurological disorders,” the investigators wrote in the study.

“Over the past 20 years, there have been pain researchers observing a pattern for pain, or tinnitus researchers doing the same for tinnitus,” Vanneste said. “But no one combined the different disorders to say, ‘What’s the difference between these diseases in terms of brainwaves, and what do they have in common?’ The strength of our paper is that we have a large enough data sample to show that TCD could be an explanation for several neurological diseases.”

The team is now planning to investigate brainwave abnormalities in other psychiatric diseases and to explore the therapeutic potential of vagus nerve stimulation as a means to reset these brainwave patterns. The approach is being developed by Vanneste and colleagues at the Texas Biomedical Device Center, UT Dallas.

“More and more people agree that something like thalamocortical dysrhythmia exists,” Vanneste said. “From here, we hope to stimulate specific brain areas involved in these diseases … to normalize the brainwaves again. We have a rationale that we believe will make this type of therapy work.”

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Source: Parkinson's News Today

Most Parkinson’s Patients Show Non-movement Symptoms Like Depression, Sleep Problems, Survey Finds

non-movement symptoms

Nearly all Parkinson’s disease patients experience non-movement symptoms, such as sleep disturbances or depression, which affect their quality of life as much as movement-related symptoms, according to an online survey of 700 participants, nearly 600 of whom completed it in full.

Patients’ caregivers are those most likely to detect non-movement manifestations of the disease.

These are the two main conclusion of the online survey, conducted by the Parkinson & Movement Disorder Alliance (PMDAlliance) with the support of Acadia Pharmaceuticals, as part of Parkinson’s Disease Awareness Month.

Of the survey’s respondents, 286 were Parkinson’s patients; 377 were care partners; 10 were noncare partners or family members of Parkinson’s patients; and 27 were categorized as “others.”

The survey, conducted online with members of the PMDAlliance from March 19-31, 2018, revealed that 90% of Parkinson’s patients show non-movement symptoms, manifested as sleep problems (84%), cognitive challenges (75%), anxiety (65%), depression (55%), hallucinations (41%), and delusions (24%).

The negative impact of non-movement symptoms on quality of life was recognized by 84% of the respondents, with nearly half of the patients (49%) finding coping with these symptoms even more challenging that Parkinson’s-related movement symptoms.

The non-movement side of the disease has a generally negative impact on the lives of patients, affecting their social activities with friends and family (70%), intimacy with their partner (68%), and with daily activities, such as household chores (68%) and running errands (67%).

“This survey clearly shows that non-movement symptoms of Parkinson’s disease make it difficult for people with Parkinson’s and their care partners to participate in activities most of us take for granted — running errands, going to the movies, eating out, or simply cooking and cleaning,” Sarah Jones, the CEO of PMDAlliance, said in a press release.

“We urge the entire Parkinson’s community — from the people with Parkinson’s and care partners, to healthcare professionals and support groups — to continue initiating conversations about Parkinson’s symptoms, especially the non-movement ones that greatly impact day-to-day living,” Jones said.

Despite its negative impact on quality of life, care partners detected the non-movement side of Parkinson’s two to four times more than patients themselves.

Hallucinations were observed by 51% of care partners and 23% of patients, and delusions were spotted by 32% of caregivers compared to 8% of patients.

These results both highlight and correlate with literature reporting that non-movement symptoms, like hallucinations and delusions, are often not reported to clinicians — only 10-20% of the cases are actually reported. This may be due to embarrassment or a misunderstanding that the symptoms are associated with the disease, since most of the time devoted to a patient’s visit with a doctor is generally focused on motor symptoms.

Other non-motor symptoms, such as cognitive challenges, anxiety, and depression were more easily detected by caregivers than patients.

“Parkinson’s disease changes how both people with PD [Parkinson’s disease] and care partners think about their future and cope with day-to-day living,” Jones said.

“Care partners are particularly attuned to how the disease is progressing in their loved one, which is why PMDAlliance added new educational resources to our website about the onset and impact of non-movement symptoms of PD,” she said.

“We want to encourage people to report symptoms to their healthcare providers, seek support, and participate in the community. This spring, we’re also hosting several Learn, Live, Connect educational conferences across the country where people can learn more about Parkinson’s disease and its many symptoms,” Jones added.

Doral Fredericks, PharmD (doctor of pharmacy), vice president of medical affairs at Acadia Pharmaceuticals, said Acadia is “honored to partner with PMDAlliance to highlight the impact of non-movement symptoms on both people with Parkinson’s and their care partners.

“We encourage people with Parkinson’s and caregivers to join the effort to raise awareness about this important aspect of Parkinson’s disease,” Fredericks added.

The post Most Parkinson’s Patients Show Non-movement Symptoms Like Depression, Sleep Problems, Survey Finds appeared first on Parkinson’s News Today.

Source: Parkinson's News Today

The Old Me Versus the New Me

 

Sherri Journeying Through

I used to be happy. I used to be a lot of fun. Or, so I’ve been told.

What happened to me? The me who used to not have to take pills to feel good? The me who used to laugh all the time with others and dance all the time with my kids, and sing all the time at the top of my lungs? The me who even I liked?

My kids have told me they want their “old mom” back. How can I give them what was stolen? How can I get back what was taken away — involuntarily, I might add?

I try to stay “up,” try to keep a positive attitude, a joyous spirit. But it’s positively a hard thing to do when this thing — this monster called Parkinson’s disease — continually insists on having its way. Every time I start feeling as if the “old me” is making a comeback, the “new me” butts in.

Sometimes, I don’t have a choice in this transition; this changing of life. Sometimes, I don’t get to choose the up days from the down days, and the in-between days from the lost days. Sometimes, the bad days really are as bad as they seem and the good days are really better than it appears. It’s a big game this little monster plays: deceiving you, deceiving me.

I’m going to try — try real hard — to hold on to the old me. The one before the pills. The me before I got lost. The me that used to laugh all the time, danced with my kids all the time, sang all the time. I am going to try to hold on to the old me, despite the color of my hair. (Of which I earned each and every gray strand by being a mom while being the old me.)

I’m going to try to be up when I’m down and not cry when I feel like crying … over lost things. And if I can’t summon up the old me while living the new me, please don’t give up on whoever I am, because the old me really is alive struggling to be loose, let out, set free.

***

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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Source: Parkinson's News Today

Depression in Parkinson’s Is Not Something to Clown Around About

depression

Sherri Journeying Through

You’ve just returned home from school. A conference. A training course. And now, what is one of the first questions you might be asked?

Did you learn anything?” or “What did you learn?”

I remember coming home from elementary school and being asked by my uncle, “Did you learn anything?” No. No, I didn’t. That was my usual response because day after day that’s how it felt. But day after day, eventually you realize you are learning. Something.

I was asked that question regarding a seminar I attended a while ago.

Did you learn anything?” Yes. Yes, I did.

Anna Sanger Reed, one of the staff members at the Parkinson’s Resources of Oregon, came from Portland to Southern Oregon to teach a “Parkinson’s Disease 101” event. She gave an overview of Parkinson’s disease (PD), which included general information regarding what PD is and who may be a likely candidate. She went over the symptoms of PD, treatments, and therapies available to patients and other resources that are currently available.

Anna mentioned a study on depression in Parkinson’s patients and the results showed the disease progressing faster when depression is involved. (Sorry, I didn’t get the name of it, but this 2009 study shares similar info, and this site has great info on the effects of depression on PD.) It makes you want to become a clown or buy one and have them around. Maybe not. Many people are scared out of their wits by clowns. I guess they can be intimidating with that big hair, those big lips, the big shoes, and always hiding behind a painted face.

So, I guess that would be the “anything” I learned, which when I think about it, was a good thing to learn. Because so many people can battle depression in Parkinson’s disease, it’s important to know if you’re one of those people. Do you feel down or blue much of the time for no apparent reason? Do you feel lifeless or tired, like you’re dragging? Do you have a lack of energy and just want to crawl back into bed (if you even got out of bed) and go back to sleep with the pillow over your head? Are your thoughts focused on defeat instead of hope?

Because depression, in a sense, can be life-threatening, it’s important to be aware of any signs that are obvious (and not so obvious) that show you may be struggling in this darkness and seek help from your doctor right away. It would most likely be a better option than buying a clown because sometimes clowns can be very, very scary. Yes. Yes, indeed.

***

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 Depression in Parkinson’s Is Not Something to Clown Around About appeared first on Parkinson’s News Today.

Source: Parkinson's News Today