Playing Helps to Calm a Blustery Day with Parkinson’s

playing

Fall is rapidly passing by, and with it goes your last opportunity to fly a kite. Even though April is National Kite Flying Month, I have always thought the blustery days of fall were the best time of year for kite flying.

I love blustery days, when the wind whistles through the trees and leaves are blown every which way. Taking a walk through the park with my grandkids in tow and stopping to jump in a pile of rich autumn color brings out the child in me, and I feel a longing to revisit my younger days.

We know we can’t go back, but going forward doesn’t have to mean succumbing to old age just because we’ve been selected to play in the Parkinson’s band. The child in us should be let loose to play as it once was: wild and free, laughing and giggling, dancing and singing. 

Laughter does a body good

You’ve heard it said that laughter is the best medicine. Where you hear laughter, you’ll most likely find someone playing or jesting with another person. There are many ways to play, and no reason not to.

Although Halloween is my least favorite holiday because it’s so creepy, I admit that I got a kick out of our 65-year-old neighbor who used to go trick-or-treating each year as SpongeBob SquarePants.

I always laughed when I answered the doorbell and found him standing there with his pillowcase half full of candy. After getting his treat, he would walk to the next house in his royal blue tights. I think he got more treats than the kids did.

To quote George Bernard Shaw, “We don’t stop playing because we grow old; we grow old because we stop playing.”

The next time your grandkids (or kids) are with you, don’t fill the time with channel surfing or watch their backs as they play video games. Instead, get out a game or a puzzle and do it together. On a rainy day, play ball in the house using balloons or have a fluff war using large pompoms, hiding behind couches and chairs or tables turned on their sides.

While I was visiting my son, he and his family played games of basketball and baseball. I mainly watched, but I wish I could have bottled their infectious laughter — that stuff that’s like medicine to a weary spirit — and brought it home with me.

Play can be creative

You can also play creatively. You don’t have to be an artist to draw or paint. There are hundreds of YouTube videos that show how to create beautiful pictures step by step. Some of my favorites are about pour painting. You pour different colors of paint into a cup, turn the cup upside down on a canvas, let the paint spread out (with a little coaxing), and voila! You’ve made an original artwork.

The opposite of a blustery day is a calm day, but sometimes it’s hard to feel calm when you’re living with a disease that can constantly have you shaking on the inside as well as the outside. That’s when it’s time to put on your windbreaker, head outside with your kite, and watch the song from “Mary Poppins” come alive:

When you send it flyin’ up there
All at once you’re lighter than air
You can dance on the breeze
Over ‘ouses and trees
With your fist ‘olding tight
To the string of your kite

***

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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Tavapadon Lessens Motor Symptoms in Patients with Early-stage Parkinson’s, Phase 2 Trial Finds

tavapadon, Parkinson's

Oral treatment with tavapadon eased motor symptoms and was well-tolerated by patients with early-stage Parkinson’s, according to data from a Phase 2 clinical trial.

Cerevel Therapeutics’ tavapadon (formerly known as PF-06649751) is a selective partial agonist of the dopamine D1 and D5 receptors, and is given as an oral once-daily tablet. D1 and D5 belong to the same family of dopamine receptors that bind to the neurotransmitter dopamine. When dopamine is present at low levels, like it is in Parkinson’s disease, individuals begin to experience dyskinesia (involuntary body movements).

The trial’s results were presented in a scientific poster, “Efficacy, Safety and Tolerability of Tavapadon in Subjects With Early Stage Parkinson’s Disease,” by David Gray, PhD, Cerevel’s vice president of chemistry and the trial’s team leader, during the 2019 International Congress of Parkinson’s Disease and Movement Disorders, recently held in Nice, France.

The international, double-blind Pfizer-sponsored Phase 2 study (NCT02847650) included 57 patients from 45 to 80 years old. All had early-stage Parkinson’s, as defined by stages 1 to 3 in the Hoehn & Yahr scale of disease severity. After nine weeks to optimize tavapadon’s dose, the treatment period included six more weeks of stable dosing.

The primary efficacy endpoint, or goal, was the change from baseline in the Movement Disorder Society – Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) Part III score of motor function.

At week 15, this score was lower (indicating improvement) with both tavapadon and a placebo, but the reduction was significantly greater with the treatment candidate (9.0 vs. 4.3 points).

Half of the patients treated with tavapadon reported being “much improved” or “very much improved,” compared with 25% in the placebo group, when assessed with the Patient Global Impression of Change (PGI-C). In contrast, no benefits were seen in daytime sleepiness in weeks 9 and 15, as measured with the Epworth Sleepiness Scale.

Tavapadon was found to be safe and well-tolerated, with most adverse events being mild or moderate. In the group taking this experimental therapy, the most common side effects were nausea, headache, sleepiness, dry mouth, and tremors.

Treatment adherence was high in both groups, with 82% of the patients on tavapadon completing the trial.

“I’m encouraged by these results, which demonstrated that tavapadon was significantly more effective than placebo in improving motor symptoms and was well-tolerated,” Gray said in a news release. “It has the potential to be a promising new treatment option for people with Parkinson’s.”

Although a previous study of tavapadon (NCT02687542) was terminated early due to lack of efficacy in moderate to advanced Parkinson’s, the “favorable profile of tavapadon in clinical studies to date” support its potential “both as a monotherapy for patients with early-stage disease and as an adjunct to levodopa for patients with late-stage disease,” said Raymond Sanchez, MD, chief medical officer at Cerevel (which was launched by Pfizer and Bain Capital in October 2018).

The company plans to start a Phase 3 trial in 2020 to investigate tavapadon in patients with early- and late-stage Parkinson’s.

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Daily Use of Cala Trio Device Effectively Eases Hand Tremors, Trial Reports

hand tremor

Using Cala Health’s non-invasive therapeutic device Cala Trio for 40 minutes twice daily effectively helped to reduce hand tremors within three months, results from a clinical study show.

The results, “Study Design, Baseline Demographics, and Interim Results from the Prospective Study for Symptomatic Relief of Essential Tremor with Cala Therapy (PROSPECT) Trial” (LBA No. 9), were presented at the International Congress of Parkinson’s Disease and Movement Disorders in Nice, France.   

Cala Trio is a wrist-worn device that delivers neuromodulation therapy, calibrated to individual needs, through the skin to provide symptomatic relief of hand tremors. The device gently stimulates the nerves responsible for the tremor, interrupting nerve circuits to allow for better control of movement.

“We are thrilled with the results of the PROSPECT trial. It is tremendously exciting to see the relief our non-invasive neuromodulation therapy brings to patients with essential tremor, without surgery or drugs,” Kate Rosenbluth, founder and chief scientific officer at Cala Health, said in a news release. “We are deeply grateful to the patients and investigators who participated in this study.”

The PROSPECT trial (NCT03597100) claims to be largest study conducted in patients with essential tremor, a benign neurological condition that is characterized by uncontrolled, rhythmic shaking, typically in the limbs. The trial enrolled 263 people at 26 U.S. sites; all had essential tremor symptoms for an average of more than 25 years (median age at study, 69.6).

Essential tremor — often misdiagnosed as Parkinson’s disease — is a progressive movement disorder most common in people ages 40 and older. It mainly affects the hands and arms, but head, voice, and leg tremors are also known.

Unlike Parkinson’s, which is associated with motor symptoms such as slow movement and muscle stiffness, essential tremor does not cause other health problems, although unsteady gait may be observed. Parkinson’s patients also typically experience tremors when their hands are at rest, while essential tremor is evident when people are using their hands.

Trial data showed that, for a majority of these people, using Cala Trio in 40-minute sessions twice daily for three months effectively reduced hand tremor severity. The average symptom relief lasted 96.7 minutes after each stimulation session — done at least two hours apart — in patients reporting benefits.

In total, 62% of participants improved from severe or moderate tremors to mild or slight tremors, according to the physician-reported Tremor Research Group Essential Tremor Rating Assessment Scale (TETRAS); 68% said their tremors went from severe or moderate before treatment to mild after Cala Trio use, according to results of the self-reported Bain and Findley Activities of Daily Living (ADL) scale.

Overall, 54% of patients reported a greater than 50% reduction in tremor power after finishing the study’s three months of treatment, and 25% experienced a 70% easing in tremor power, the study reports.

Participants also reported significant improvement in Quality of Life in Essential Tremor Questionnaire (QUEST) scores by study end.

“For patients living with ET [essential tremor], this means that they can now more easily complete daily tasks such as handwriting, drinking from a glass, and using a soup spoon — tasks that were otherwise much more difficult,” said Stuart Isaacson, MD, director of the Parkinson’s Disease and Movement Disorders Center of Boca Raton in Florida.

“Treatment with Cala Trio represents a novel approach to improving tremor in people living with essential tremor and provides a safe and effective therapeutic option.”

Transient device-related adverse events were reported in 18% of participants, which included wrist discomfort, skin irritation, and pain. None required medical intervention.

Cala Trio has been cleared by the U.S. Food and Drug Administration to treat essential tremor, and is currently available by prescription in select U.S. markets.

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Stress Can Result in Resisting Sanctuary

sanctuary

BOOM! Abruptly out of bed, I’m disoriented by flashing lights reflecting on the bedroom walls. I sit on the edge of the bed and look out onto what should be morning sun, bringing to life the cheery reds of bee balm against a backdrop of white birches. Instead, the sky is black. I thought it was night, but the clock says it’s morning. Rain hammers out a discordant melody on our metal roof. It’s a gloomy, wet, cold day. It sure would be nice to stay curled up under the covers.

Neo shouts at a volume comparable to the thunder, “Heck, no! You have only two days until your big research presentation.”

I snap back, “I know! I know!” The cotton oasis beckons me to go fetal. Neo is quite annoyed with me.

“What are you thinking?” Neo inquires.

“Oh, nothing. You’re right. I should look over the presentation, but I can’t get motivated to do so. I’m so nervous that I can’t even turn on my computer,” I say, almost in a whisper, as I reach to pull the covers over myself.

“Oh, no, you don’t. Get out of bed and let’s face this fear. What’s there to be afraid of? You know the material and you enjoy public speaking.” Neo doesn’t understand this latest development in my Parkinson’s.

I retort, “It’s not that at all. It’s about my physical ability to do it. This summer, my Parkinson’s symptoms got worse, and there are times when I cannot perform motor tasks. There is nothing I can do to stop these motor dysfunctions. What if one happens right when it’s my turn to stand and give my presentation?”

“So your fear of failure due to the possibility of motor freezing is preventing you from doing anything at all?” Neo replies with a slight sneer.

Somewhat defeated, I offer, “I could go back to bed.”

Neo points out, “That’s not going to solve anything. Why not enter your sanctuary for a while? You know that helps.” He is saying what I already know, but it is not motivating me to act.

“Really?” I counter. “Look outside. It’s not exactly walk-in-the-park weather. Besides, my focus should be on how to make my presentation better.” I move to the bathroom and start getting ready for the day.

Neo insists, “Embracing sanctuary is not affected by the weather. Your senses and your mind can still take in all that sanctuary offers, even in the rain.”

I feel my emotions start to escalate. “I don’t feel like calming down. I need the emotional energy to light up enough passion so I can break the chain of procrastination and the fears about my Parkinson’s symptoms.” I dress and head to the kitchen for breakfast.

Neo surveys my actions as I drop part of my breakfast on the floor. “You think you are more physically capable if you are all energized and full of passion?” It’s a good thing Neo is incorporeal and safe from any unintended physical harm.

“I—” Pausing, I stare off at nothing in particular. “I guess not. But it feels familiar and, in that way, safe. I can’t quiet down enough to use sanctuary right now. Each time I move toward quieting, the pain gets so loud it’s unbearable. That’s certainly not conducive to getting my presentation ready.” I pace the floor as I continue to mutter about the presentation that’s due in two days.

Neo points out the obvious: “Man, you are seriously stressed.” He is adept at recognizing when the situation is going downhill quickly. “Time in the sanctuary does help with stress. You know that stress unattended will just intensify all your Parkinson’s symptoms — physical, mental, emotional, and psychological. That big rock you’re throwing at yourself creates too many ripples in the pond.”

Between mouthfuls of granola and orange juice, I say, “I don’t have the time. Perhaps another day I could handle this. I can’t look at that reflecting pond right now. I’m afraid that I will hate what I see.”

“I know,” Neo says. “The path is always here when you want to walk it, and I’m with you.” Neo and I watch the rain let up, leaving behind garden flowers painted with iridescent droplets that reflect the beams of sunlight poking through the storm clouds.

***

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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Accordion Pill Enables Higher Optimal Doses of Levodopa Than Sinemet, Data Show

Accordion Pill

Patients with Parkinson’s disease who were treated with Accordion Pill Carbidopa/Levodopa (AP-CD/LD) tolerated a higher dose of levodopa and experienced less variability in plasma levels of this standard therapy than those on Sinemet.

Those are the top-line results from a Phase 3 clinical trial and data from a pharmacological study.

The effectiveness of levodopa may wear off with chronic treatment, resulting in the reappearance of motor complications, known as “off” periods. As this is associated with levodopa’s limited absorption in the upper gastrointestinal tract, Intec Pharma developed AP-CD/LD, which includes a gastric retention and release system to enable both immediate and controlled release. This controlled release mode prolongs the discharge of the medication into the stomach to eight to 12 hours, which may improve absorption.

The double-blind ACCORDANCE study (NCT02605434) is comparing AP-CD/LD with Merck’s Sinemet, an immediate release formulation of CD/LD. A total of 320 patients with advanced Parkinson’s were included in the double-blind part of the study (65.6% men, average disease duration 8.7 years), with the final visit occurring last May.

All eligible participants were on a daily levodopa dose within 400 and 1,300 mg and experienced at least 2.5 hours of off periods. After study completion, the patients could join a 12-month open-label safety extension study of AP‑CD/LD.

After two periods of six weeks each to stabilize and optimize patients on Sinemet and then on AP-CD/LD, the patients were assigned randomly to either approach over 13 weeks, with a two-week follow-up.

Two AP-CD/LD doses were tested: 50 mg of carbidopa, with 400 or 500 mg of levodopa, two or three times daily. Similar to the baseline percentage of daily off time, the patients’ mean age did not differ significantly between the two groups: 62.8 years in the AP-CD/LD group and 64.9 years in patients receiving IR-CD/LD.

At the recent  International Congress of Parkinson’s and Movement Disorder Society (MDS 2019),  R. Michael Gendreau, MD, PhD, Intec’s chief medical officer, presented the scientific poster “Patients Experiencing Motor Fluctuations with Parkinson’s Disease: Participant Characteristics in the ACCORDANCE Phase 3 Efficacy and Safety Trial of Accordion Pill-Carbidopa/Levodopa.” The presentation showed that patients on AP-CD/LD tolerated higher daily doses of levodopa than those taking Sinemet.

Specifically, 86.2% of patients taking AP-CD/LD achieved an optimal levodopa dose of 1,200 mg or greater, compared to only 19.7% among those on Sinemet.

Previous results from ACCORDANCE showed that, compared with Sinemet, AP-CD/LD did not provide greater reduction in daily off periods, benefits in “on” time without troublesome dyskinesia (involuntary body movements), or improved motor function scores, as assessed with the  Unified Parkinson’s Disease Rating Scale.

In a press release, Gendreau said that this lack of significant benefits of AP-CD/LD may have been due to confounding effects from patients whose dose was increased to the maximum (50/500 mg).

An analysis of lower doses showed a greater difference in mean daily off time between AP-CD/LD and IR-CD/LD in participants who were not dose-limited during the Accordion Pill titration process.

“This suggests that for many participants, AP doses higher than those available in this study may have been necessary to achieve optimal efficacy,” said Gendreau.

Also at MDS 2019, Jeffrey A. Meckler, Intec’s vice chairman and CEO, presented the study, “Pharmacokinetics of Accordion Pill-Carbidopa/Levodopa Following Multiple Doses in Patients with Parkinson’s Disease.” That presentation showed a pharmacokinetic (PK) comparison of AP-CD/LD 50/500 mg three times per day and the immediate release form (37.5/150 mg) five times daily in 12 patients. (Of note, PK refers to how a compound is absorbed, distributed, metabolized and eliminated by the body.)

After treatment with the immediate release form on day 1, the patients were instructed to take AP-CD/LD until day 8, when they returned to the clinic in the off state and received AP-CD/LD three times over 10 hours.

In line with Phase 2 findings — which also showed reduced motor fluctuations — preliminary results showed that AP-CD/LD provided less variability in levodopa’s plasma levels. Overall, as variable plasma levodopa levels have been associated with motor complications, the findings “suggest that treatment with AP-CD/LD may reduce motor complications,” the team wrote. AP-CD/LD was well-tolerated and no serious adverse side effects were reported.

“We believe the data underscored the potential of AP-CD/LD in PD while highlighting its long-term safety data,” said Meckler. “We have initiated a formal process for partnering AP-CD/LD in PD and this enhanced exposure will be important as we seek to partner AP-CD/LD for continued late-stage clinical development and commercialization in [Parkinson’s] patients.”

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Parkinson’s Foundation to Present Spanish-language Conference Oct. 19

Parkinson's Foundation conference

The Parkinson’s Foundation’s fourth annual Spanish-language conference, set for Oct. 19 in Norwalk, California, will provide the latest information about Parkinson’s disease treatment and management.

Called “Hacia Adelante: Navegando el Mar del Parkinson’s” (“Forward: Sailing the Parkinson’s Sea”), the free conference is for patients, families, and healthcare providers interested in learning how to live well with Parkinson’s. All sessions and activities will be conducted in Spanish.

“Parkinson’s is more prevalent in Hispanics than in any other U.S. ethnic group, but studies confirm that many Hispanics are underserved when it comes to accessing necessary Parkinson’s information, treatment and care,” Fernando Cubillos, MD, the foundation’s senior director of research programs, said in a press release.

“As part of our mission to tackle this problem head on, we’re providing this conference to better empower and serve Latinos living with the disease through expert care, education and advocacy that is patient and community centered.”

In addition to presentations by a host of expert physicians and advocates, the event will include question-and-answer sessions, community resources, exercise and dance demonstrations, live music performances, and complimentary meals and parking. Grammy and Latin Grammy award-winning music producer Sebastian Krys will talk about his experience with Parkinson’s. The conference will take place from 9 a.m. to 3 p.m. at the DoubleTree by Hilton, 13111 Sycamore Drive.

Conference topics were chosen by the community. They include symptom management, healthcare system navigation, exercise, remaining motivated in the face of Parkinson’s, and caregiving as a family. Register here or by calling the bilingual Parkinson’s Foundation helpline at 800-473-4636.

On a related topic, the foundation presents a new episode of the podcast, “Substantial Matters: Life and Science of Parkinson’s,” every other Tuesday. In one episode — “What We’ve Learned from the Hispanic Parkinson’s Community” — Claudia Martinez, the Hispanic outreach coordinator at the Muhammad Ali Parkinson Center in Phoenix, describes the methods she uses to help Hispanic patients get the best possible care.

The most common neurodegenerative disease after Alzheimer’s, Parkinson’s affects nearly 1 million U.S. residents and 10 million globally. In the United States alone, 60,000 new cases are diagnosed annually.

The Parkinson’s Foundation works to enhance patient care and advance research toward a cure.

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Mitsubishi Tanabe Pharma Shares Results from Phase 2 Study of ND0612 for Advanced Parkinson’s

ND0612

Continuous delivery of carbidopa/levodopa (CD/LD) with ND0612 under the skin led to quick improvement of clinical status and better quality of life for  patients with advanced Parkinson’s disease, according to patient-reported outcomes from a Phase 2 clinical trial.

Now, a global Phase 3 study named BouNDless (NCT04006210) is recruiting Parkinson’s patients who have motor fluctuations characterized by the reoccurrence of motor symptoms between levodopa doses. The trial will be conducted at approximately 120 sites globally. (More information on contacts and locations is available here.) This study will compare the effectiveness, safety and tolerability of ND0612 to oral immediate-release CD/LD.

ND016 is delivered by subcutaneous (under-the-skin) infusion via a pump system to increase brain levels of dopamine, found in lower levels in people with Parkinson’s. It has been developed by NeuroDerm, which, similar to Mitsubishi Tanabe Pharma America (MTPA), is owned by Mitsubishi Tanabe Pharma Corporation.

The results from a 28-day, open-label study (NCT02577523), “Impact of ND0612 on patient reported outcomes: A blinded rater study of 2 dosing regimens,” were presented at the 23rd International Congress of Parkinson’s Disease and Movement Disorders in Nice, France.

The trial included 38 patients (age 30–80) assigned randomly to 24- or 14-hour infusions of ND0612. Those in the 24-hour group received a daily CD/LD dose of 720/90 mg, while those in the 14-hour group wee given a CD/LD dose of 538/68mg plus a morning oral dose of CD/LD of 150/15 mg.

After one day of standard oral CD/LD, the patients were treated with ND0612 over 27 days. Supplemental oral CD/LD was used if needed.

Patient-reported outcomes were measured using the Unified Parkinson Disease Rating Scale (UPDRS) part II (activities of daily living) at day 28, and the Parkinson’s Disease Questionnaire (PDQ-39, a measure of health status and quality of life) at day 27. The participants also self-rated their impression of improvement at days three and 28.

The results showed that more than 70% of patients reported an improvement in overall clinical status as early as day three. Continuous (24- group) CD/LD delivery led to a significant improvement — a 2.9-point decrease — in the UPDRS ADL score compared to baseline. These scores also trended toward  improvement in the 14-hour group.

Quality of life also was better for patients in the 24-hour group, as the PDQ-39 score reduced by 7.5 points. Again, these scores also trended toward  improvement in the 14-hour group.

Six of the eight PDQ-39 domains were associated with improvements: bodily discomfort, activities of daily living, emotional well-being, mobility, communication, and stigma.

“Many people with Parkinson’s disease take multiple doses of oral CD/LD as their disease progresses, which can cause additional motor fluctuations that may be debilitating and contribute to poor quality of life,” Atsushi Fujimoto, MTPA’s president, said in a press release. “The data presented at MDS add to the body of research on ND0612.”

Sheila Oren, MD, chief medical officer at NeuroDerm, noted the “potential impact of stabilizing CD/LD levels with continuous treatment on a variety of clinical, daily living and quality of life measures.”

In the study “BouNDless: An active-controlled randomized, double-blind double-dummy study of continuous ND0612 infusion in patients with fluctuating Parkinson’s disease ,” the team also presented the design of the BouNDless trial.

The first of approximately 300 patients was enrolled last month. Eligible patients are those not responding to standard treatments, with a minimum of 2.5 hours of motor fluctuations daily and at least two hours per day in the “off” state (no motor control) during waking hours.

The trial’s primary objective is to determine whether ND0612 improves self-reported daily “good on time,” defined as the sum of “on” time without dyskinesia (involuntary movements) and “on” time with non-troublesome dyskinesia.

“We look forward to gaining additional insights on this investigational treatment through the Phase 3 study,” Fujimoto said.

“We are proud of the research behind ND0612 to date and committed to learning more about this investigational treatment for people with fluctuating Parkinson’s disease through the recently initiated Phase 3 study,” Oren said.

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MJFF Announces $10M Challenge to Develop Critical Research Tool for Parkinson’s

MJFF challenge

With the aim of opening entirely new avenues in Parkinson’s disease research and care, The Michael J. Fox Foundation (MJFF) has announced a $10 million contest to drive development of an imaging tracer that would be used to see alpha-synuclein protein in the living brain.

Called the “Ken Griffin Alpha-synuclein Imaging Competition,” the project will award $8.5 million to up to three investigative teams. After two years, the team that makes the most progress will receive an additional $1.5 million to continue. The application deadline is Jan. 17, 2020.

Development of such a critical and, so far, elusive research tool would be a game changer for Parkinson’s. Of the roughly 10 million patients globally, nearly all have accumulations of the protein in their brains. Investigators believe these alpha-synuclein masses negatively affect cells and cause disease symptoms. The problem is the clumps are visible only after patients die, through post-mortem studies.

The competition to produce technology for the living brain is largely funded by a $7.5 million gift from Ken Griffin, founder and CEO of the investment company Citadel.

“Providing researchers and clinicians with the ability to detect and monitor disease would be revolutionary for the field and, most importantly, for patients,” said Todd Sherer, PhD, MJFF CEO, in a press release. “Ken Griffin’s gift invigorates research toward this important tool, which will make a meaningful impact in the lives of everyone touched by Parkinson’s.”

The MJFF has been at the fore of efforts to develop a positron-emission tomography (PET) tracer. It has sponsored independent research and organized a consortium around it. Three years ago, the MJFF announced it would award $2 million to the first team to reveal clinical proof of a tracer and share it with researchers at large. That challenge continues.

Meanwhile, at the organization’s 2019 PD Therapeutics Conference on Oct. 15, biotechnology company AC Immune will present  findings from its MJFF-supported tracer study.

The Ken Griffin award announcement is expected by April. The MJFF is encouraging applications from multidisciplinary teams, and is particularly interested in collaborations between academic and industry groups that have access to diverse compound libraries.

“The Michael J. Fox Foundation has led the charge in advancing ground-breaking research in this field over the past 20 years,” Griffin said. “I hope this partnership with the Foundation will bring us closer to a cure for the millions of people living with Parkinson’s disease.”

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Examining Muscle Weakness and Rigidity in Parkinson’s Disease

muscle weakness

The sun peeks over the horizon, and before long Dad is up and at it. It’s a boxing day, and he wants to time his medications to optimize control over his Parkinson’s symptoms.

The other part of his routine revolves around his morning stretches. Muscle rigidity is the first obstacle that he faces when he wakes, and he chooses to confront it with a stretching practice.

Parkinson’s disease claims multiple functions as it progresses. Understanding how the disease affects the patient may help to inform treatment decisions. I’m a curious person, and Dad’s stretching routine makes me wonder if Parkinson’s disease directly affects the way muscles work. I think about how muscle rigidity and weakness are linked and how others handle these symptoms.

Muscle weakness and rigidity

As his Parkinson’s progresses, Dad complains that his stiffness is slowing him down. The frequency and intensity with which it occurs seem to be increasing. To better understand the disease and how it relates to the body, I decided to explore the research.

In an abstract of a literature review published by the American Journal of Physical Medicine & Rehabilitation, the authors stated that “isokinetic muscle strength was decreased in patients with Parkinson’s disease and that muscle weakness was not specifically related to tremor or rigidity.”

Brain-related muscle weakness

In the early 1800s, surgeon James Parkinson first described Parkinson’s disease as the “Shaking Palsy.” Back then, doctors observed muscle weakness as a key component of the disease.

According to the American Parkinson Disease Association, “Although patients feel the weakness in their limbs, the problem is in the brain.” Parkinson’s disease is a neurological disease, which affects the entire body, including muscular strength.

How exercise can help

Research shows that regular exercise has significant benefits for Parkinson’s patients. Since the disease affects flexibility, strength, and balance, patients are encouraged to use targeted exercise routines to manage the disease.

A study review published in the Clinical Journal of Sport Medicine found that exercise improves overall physical performance in Parkinson’s patients. The authors concluded that future research should examine the long-term effects of exercise programs.

As a rock climber, I spend a lot of time pulling on jagged edges. I’ve learned that it’s important to balance muscle growth with the opposite action. I’ve integrated pushing (yoga) into my routine to balance the pulling that I do on a rock wall. Focusing on both pushing and pulling helps my body to stay balanced and prevents injuries.

While I haven’t yet encountered a rock climber with Parkinson’s, the same premise could apply. If Parkinson’s causes constant muscle contractions, how can we encourage those muscles to extend and relax? Yoga emphasizes both strength and flexibility. And it’s possible to practice a routine at home. Starting a yoga practice might offer a solution to managing muscular changes.

Managing muscular changes

As Parkinson’s progresses, we must make adaptations. We need to be creative to find solutions to challenges relating to tremors or stiffness. Dad incorporates regular stretches and boxing sessions into his life — and he notices a difference when he’s unable to make it to a boxing class.

While we’re unable to eliminate muscular weakness and rigidity, we can take an active approach to ease these symptoms. As well as establishing a regular exercise routine, other treatment options include physiotherapy and occupational therapy.

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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 Examining Muscle Weakness and Rigidity in Parkinson’s Disease appeared first on Parkinson’s News Today.

Giving Up Is Not an Option: I Still Have Purpose

purpose

I discovered this quote a while ago and found it to be inspiring: “It is impossible to be satisfied with existence once you have tasted purpose.”

When you have Parkinson’s disease, it can sometimes feel as if you’re merely existing and no longer have a purpose. Your hopes and dreams have vanished. Your desire to change the world has faded, your ambition has waned, and the goals that once kept you moving forward seem unimportant.

But despite the tough days, when motivation is lacking, and clouds hover overhead, you still seek purpose. You want to matter. But it’s hard when it seems as if others see you as an invalid, unable to do anything for yourself, never mind someone else.

In my younger days, I was busy all the time. I felt that I had purpose. My husband and I raised three children. I ran a small business while teaching in a garden lab at my children’s elementary school and holding a Bible study group. Then we moved.

I overcame the loneliness of living in a new town. I started a new job, taught Bible studies, and directed children’s choirs. I coordinated women’s retreats and got involved with other community activities. I loved it.

Then I was diagnosed with Parkinson’s

It didn’t happen suddenly, but when it did, I began to lose my sense of purpose. I questioned my value. Was I contributing to life or taking from it? Could I help make life better for someone else or was I merely existing? 

Just when you feel that giving up could be a viable option, a blessing falls from the heavens and stops your heart from breaking.

What’s your purpose?

Four years after my diagnosis with Parkinson’s disease, my first grandchild was born, and I received the blessing of being able to care for her almost every day. Her smiles took my mind off my tremors. Her desire to play in the park and go shopping kept me active even when I thought that I couldn’t move. I realized I had more reserves in my storage tank. I still had purpose.

Now I often watch my 4-year-old grandson. His giggles make me forget my pain and other symptoms. Or perhaps I choose to ignore the pain. Having a sense of purpose can make a big difference. 

Maybe your purpose is to bestow smiles, encourage someone with kindness, or sit with them in their grief. Your contribution doesn’t have to be significant, but if you think about it, a smile is a precious thing and more meaningful than we realize.

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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 Giving Up Is Not an Option: I Still Have Purpose appeared first on Parkinson’s News Today.