I have been seeing a physical therapist four times a week for the last month. I hadn’t injured myself, though I experience aches and pains with Parkinson’s disease. My neurologist referred me to a physical therapist who teaches the BIG program. The LSVT BIG program is designed for people with Parkinson’s to bring their movements […]
Read the full version of the the post I’ve Made BIG Improvements with Parkinson’s Therapy Program on PDlink.org.
by Sherri Woodbridge from Parkinson’s News Today
I don’t want to take away from Mad magazine’s Alfred E. Neuman or singer-songwriter Bobby McFerrin, but the idea that a pair of rose-colored “don’t worry” glasses will change my life for the better has never sat well with me. Pollyanna is not a guest in my home. “Look at all the wonderful things in […]
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Sometimes, I beat myself up when something goes wrong in my life. I convince myself that if I had only done it this way instead of that way, things may have turned out so much better. Or, if I had only said something different, I might have been more helpful. But there are no do-overs in life.
Truth versus a lie
Isn’t it much easier to play the negative tapes stored in the recesses of our brains than it is to listen to truth tapes? It is for me.
I remember arriving at one of my Parkinson’s appointments several years ago carrying a load of guilt. If only I hadn’t used so much bleach to whiten the clothes or so much 409 to clean the cupboard doors. Ant spray, wasp spray — you name it, I’d probably used it. I had truly convinced myself I’d had something to do with “getting” Parkinson’s. My doctor finally helped to lift my burden by telling me the truth: It wasn’t my fault. READ MORE
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Exercising at home with a stationary bicycle — using a motivational app and remote supervision to increase compliance — eases motor complications in patients with mild Parkinson’s disease and improves their cardiovascular health, according to results from a clinical trial.
Findings from the study, “Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson’s disease: a double-blind, randomised controlled trial,” were published in the journal The Lancet Neurology.
Though high-intensity aerobic exercise has shown motor benefits in people with Parkinson’s, the effectiveness of home-based programs in a broader patient population has not been determined.
A team from Radboud University Medical Center, The Netherlands, designed the “Park-in-Shape” intervention that incorporates virtual reality software and real-life videos — a so-called “exergaming” approach — to make exercising on a stationary bicycle at home more engaging.
Overall, the single-center, randomized trial (NTR4743) tested whether this type of aerobic exercise would improve motor function in patients with mild disease severity (a Hoehn and Yahr stage 2 or less) who were on stable dopaminergic treatment or not yet started on such therapies.
To be included, the patients (ages 30–75) had to exercise less than is recommended for older adults, meaning vigorous exercise over 20 minutes up to two times per week, or moderate exercise over 30 minutes up to four weekly sessions.
The study compared two groups, in which all 130 patients exercised three times per week over six months and were on stable dopaminergic medication (stable dose for at least one month), or were still without treatment and expected not to start treatment within the next month.
But while 65 patients performed stretching, flexibility and relaxation exercises in 30-minute sessions (control group), the other 65 patients exercised for 30 to 45 minutes on the stationary bicycle at home (intervention group). The patients were instructed to cycle at a target heart rate zone, which was gradually increased as the participants became fitter.
All participants had a motivational app with tips for optimal training, support from loved ones, and information to track progress. All were supervised once at home and also remotely every two weeks.
Patients were evaluated during their “on” and “off” states — when dopaminergic medication is still effective, or when it wears off.
Results showed that the patients exercising on the stationary bicycle had significantly better motor function after six months. Specifically, in their “off” state, the increase in their Movement Disorders Society—Unified Parkinson’s Disease Rating Scale score was 4.2 points lower than that of the controls. Also, unlike the controls, patients on aerobic exercise experienced improvements in cardiovascular fitness by the end of the study.
“Aerobic exercise can be done at home by patients with Parkinson’s disease with mild disease severity and it attenuates [lessens] off-state motor signs,” the scientists wrote.
In contrast, no benefits were seen in non-motor complications such as fatigue, anxiety, depression, or cognitive function, which the researchers attribute to the short duration of the intervention.
Over the span of the study, the mean number of aerobic exercise sessions was 54, while that of the control sessions was 60. This corresponds to 75% and 83% of the expected 72 sessions for each group, respectively.
“We were pleasantly surprised that people with Parkinson’s disease were able to adhere to their exercise regimes so well,” Nicolien van der Kolk, the study’s lead author, said in a press release. “The beneficial effect on their motor disability was also large enough to be clinically relevant. As such, exercise is a very useful addition to the medication.”
Five patients were lost to follow-up, four of whom were in the cycling group. Ten patients in each group did not complete their assigned intervention, with technical issues being the main reason for discontinuation in the cycling group. However, as they attended the follow-up visit, these patients were included in the analysis.
Eleven patients experienced adverse events (AEs, or side effects) potentially related to the intervention, seven of whom were in the cycling group. These included back or joint pain and palpitations. Three patients discontinued exercise due to AEs.
In turn, the seven serious AEs observed (three in the cycling group) were all unrelated to the program. They included knee and fall-related injuries, hip fracture, and severe dyskinesias, which refer to involuntary, jerky movements.
“This study is very important,” said Bas Bloem, MD, PhD, the study’s principal investigator. “We can now start researching whether much more long-term cycling can also slow the disease progression.”
“Also, this new ‘exergaming’ approach that we have developed is very suitable to achieve long-term improvements in exercise behavior for patients with a range of other disorders that could also benefit from regular exercise,” Bloem said.
“Future studies should establish long-term effectiveness and possible disease-modifying effects,” the researchers concluded.
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The hallmark presence of Lewy bodies in the pathway related to sense of smell and in the gut years before a Parkinson’s diagnosis, as well as the potential cumulative impact of different triggers, may help researchers understand the environmental factors that contribute to the development of the disease, according to a review study.
The study, “The Search for Environmental Causes of Parkinson’s Disease: Moving Forward,” appeared in the Journal of Parkinson’s Disease.
Environmental factors contribute at least partially to late-onset sporadic Parkinson’s disease. Because neurodegenerative changes are too advanced to be stopped or reversed by the time a diagnosis is reached, understanding modifiable risk factors that can help to identify the disease and allow for an early intervention may lead to more successful treatment of Parkinson’s, the neurological disease with the fastest-growing prevalence.
“The greatest risk factors for [Parkinson’s] are likely environmental and not genetic,” Honglei Chen, MD, PhD, from Michigan State University, and Beate Ritz, MD, PhD, from the University of California Los Angeles, said in a press release. “Yet we know relatively little about environmental causes or triggers. Identifying these and defining ways to reduce their impact will be great research challenges for the coming two decades.”
Environmental factors may trigger Parkinson’s or modify its progression during the prodromal (early) stage, in which early symptoms or signs are present, but clinical diagnosis is not yet possible. Among the reported factors, smoking, coffee, exercise, plasma urate, and use of ibuprofen have been linked to a lower risk of Parkinson’s, while pesticide exposure and traumatic brain injury have been associated with a greater risk.
Apart from two pesticides known as rotenone and paraquat, researchers have had difficulties in providing evidence that other risk factors can cause the disease. Reverse causation — meaning that Parkinson’s changes lifestyle and behavior before a clinical diagnosis rather than the other way around — has been proposed as an explanation for the link between these environmental triggers and Parkinson’s in its early stages.
“This prodromal stage is of major interest for prevention efforts,” the researchers said in the release, adding that the discovery of Lewy bodies — protein aggregates mainly composed of alpha-synuclein that are characteristic of Parkinson’s — in the olfactory pathway and the digestive tract made targeting factors that enter the body via the nose or gut “even more important.”
The Braak hypothesis presents a potential explanation for environmental contributions in Parkinson’s prodromal development. It suggests that Lewy pathology starts in the brain’s olfactory bulb — an area of the brain involved in the sense of smell — or in enteric (gut) nerves (nerve cells that control the function of the gastrointestinal tract) years, if not decades, before reaching the substantia nigra — an area of the brain key in the control of movement that shows progressive loss of dopamine-producing neurons in Parkinson’s disease.
Findings such as a reduced sense of smell and constipation years before a Parkinson’s diagnosis have supported the Braak hypothesis. Pesticides and other environmental toxins such as air pollutants, of which there is growing evidence of harmful effects on cognitive function, organic solvents, and meats cooked at high temperatures may lead to Parkinson’s through these pathways, although a proinflammatory gut microbiome — the community of bacteria, viruses and fungi that lives in the gut — has also been proposed as a potential starting point. Certain genetic factors may also interact with these environmental causes to boost the risk for the disease.
Besides the Braak hypothesis, the scientists also discussed reported epigenetic differences — alterations in gene function but not in the DNA sequence itself — in the blood and saliva of people with Parkinson’s as well as the importance of lifelong exposure to environmental triggers.
The exposome, which refers to all environmental exposures over a lifetime, suggests that multiple environmental stimuli combine to increase the risk of Parkinson’s. This has been shown with traumatic brain injury and paraquat exposure, and with smoking combined with factors such as caffeine intake and physical activity.
“We are at an exciting moment to unveil environmental contributions to [Parkinson’s] development and progression by taking a life-course approach, and utilizing novel tools to assess environmental exposures,” the researchers said.
While they caution that the long duration of the prodromal stage complicates understanding the extent to which environmental factors contribute to Parkinson’s, the investigators “nevertheless believe it will be possible to assess long-term exposures through large-scale environmental monitoring and by using novel biomarkers that reflect the exposome.”
Both the Braak hypothesis and the exposome concept provide “a theoretical framework for scientists to design future studies to decipher the environmental causes of [Parkinson’s] and develop early interventions to halt the progression to the characteristic motor dysfunction in [Parkinson’s],” they concluded.
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The expanded grant program is intended to help Parkinson’s disease patients around the world gain access to quality speech treatment to maintain their speaking abilities and minimize the threat of swallowing problems.
In addition to facilities in the U.S., grant recipients this year will include five clinics based outside the country. Applications are now being accepted and are due March 1. Recipients will be announced in April during Parkinson’s Awareness Month. Go here for full eligibility requirements, and visit this site to apply.
Nonprofit organizations, universities/graduate students, and hospitals who would like to bring PVP’s speech therapy program to their communities are encouraged to apply. Applicants must have the physical space and clinical staff necessary to provide both individual and group speech therapy. Last year’s winners may reapply for continued support of their programs.
For international applicants, awards are open to any clinic that can use English or Spanish-based therapy materials.
To achieve its mission of making speech treatment widely accessible, PVP recognized a need to support speech language pathologists. These professionals, according to the organization, get low insurance reimbursement for services, and also often have trouble securing funding from employers for specialized training and supplies. The grants are designed to provide pathologists with the knowledge and tools needed to help the Parkinson’s community.
The grant program, which honors the late Parkinson’s speech expert Daniel R. Boone, PhD, was launched last year with 92 grants awarded to speech therapy clinics nationwide. Of them, 34 were university-based clinics.
More than 900 speech language pathologists and graduate students received training in SPEAK OUT! and LOUD Crowd therapy protocols, plus speech therapy supplies, funding support for their organizations, and a trip to PVP’s clinic in Dallas-Fort Worth for hands-on training.
“Our grant program was a huge success in 2018,” said PVP CEO Samantha Elandary, in a press release. “Our goal is to make quality speech treatment available to those living with Parkinson’s around the globe.”
According to Elandary, Parkinson’s affects more than 1 million U.S. residents, and up to 10 million people worldwide. Some 89 percent of patients are likely to develop speech disorders that can lead to swallowing difficulties.
Combining speech, voice, and cognitive exercises, SPEAK OUT! addresses the motor speech issues related to Parkinson’s. LOUD Crowd is a voice maintenance program consisting of speech therapy groups and a singing segment to foster voice strength retention.
Using the two-part trademarked speech therapy program, the patient and a speech language pathologist tackle a series of speech, voice, and cognitive exercises outlined in a specialized workbook. Stressing “speaking with intent,” the program switches speech from an automatic function to a deliberate act. Because speech muscles are also used for swallowing, the benefits of the therapy are twofold.
Grant funding will come from the more than $2 million PVP raised over the past holiday season.
Through intensive speech therapy, follow-up support, research, education and community awareness, the nonprofit aims to preserve the voices of those with Parkinson’s and related disorders. To date, it has trained more than 1,300 speech language pathologists nationwide. Internationally, it has trained therapists in eight countries.
Among other offerings, the organization also hosts an educational lecture series. Earlier this month, Susan Imke, a certified gerontological nurse practitioner who focuses on families living with Parkinson’s disease and other neurodegenerative disorders, discussed “Optimal Nutrition for Living Well with Parkinson’s.” The next presentation, “Packing Some ‘Punch’ Into Your Parkinson’s Exercise Routine,” will be Feb. 9.
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by Jean Mellano
“You don’t have to be positive all the time. It’s perfectly okay to feel sad, angry, annoyed, frustrated, scared and anxious. Having feelings doesn’t make you a ‘negative person.’ It makes you human.” –Lori Deschene
As many people with Parkinson’s will attest, both Parkinson’s disease (PD) symptoms and finding the right treatment to alleviate them can be extremely frustrating.
Just as frustrating for me is that everyone thinks I am fine. Since I have no tremors, there are no obvious symptoms. Most well-meaning, healthy people either tell me I look great or that they have the same issues as me — cognitive decline, balance, poor fine motor skills, slowness of movement, and fatigue.
I struggle to maintain balance and must consciously avoid walking into furniture. My body, especially on the left side, does not always listen to me when I tell it to do something. Trying to maintain focus to do this is draining in itself. I also feel weak inside and I am always extremely fatigued. It is an exhaustion that no amount of sleep or rest can diminish.
A glimpse into my frustration
To help my fine motor skills, I have taken up ukulele lessons. I never played any instrument in my life, so I have no muscle memory to call on. The left hand and fingers play a huge role in learning how to use this instrument.
Recently, I had a meltdown in one of my lessons. My left fingers were not listening to me while trying to play some chords. The instructor was very patient, but I don’t think he understood the extent of my struggles. I was trying to play a G chord, which requires positioning three fingers from my left hand on various frets. These fingers would not cooperate and they just froze. With all the energy I expended trying to get my fingers positioned, I worked up a sweat.
Finally, so full of despair and frustration over what I have lost, I just broke down in tears. I can no longer control my body.
The frustration continues on many fronts for me: the symptoms themselves, trying to find something to help treat my symptoms, and well-intentioned people not comprehending what I struggle with daily. Many years before I was affected by this disease, a friend of mine was diagnosed with PD. I could never understand why it was so hard for her to put on a seat belt.
Now I know.
“I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” –George H. W. Bush
The post My PD Frustration Consists of More Than Only Symptoms and Treatments appeared first on Parkinson’s News Today.
People with Parkinson’s have a new treatment option due in part to funding from The Michael J. Fox Foundation (MJFF). On December 21, 2018, the U.S. Food and Drug Administration approved Inbrija, an inhaled levodopa powder, for “off” episodes, when Parkinson’s symptoms are not well controlled with oral medication. MJFF supported early clinical trials of the treatment, and this is the first regulatory approval of a Parkinson’s therapy directly funded by our Foundation.
“Our strategy of funding high-risk, high-reward projects with a focus on patient impact has paid off,” said MJFF CEO Todd Sherer, PhD. “Today people with Parkinson’s have a new option to manage life with the disease. Because of our Foundation’s investments, many more treatments to manage symptoms and to stop progression are moving closer to pharmacy shelves and patient hands.”
MJFF partially funded Phase I and II trials of Inbrija by biotechnology company Civitas Therapeutics in 2011and 2013 with two grants totaling $1.3 million. Acorda Therapeutics, Inc. acquired Civitas in 2014 and continued the development of Inbrija.
De-risking Investments for Larger Partners
We provide early-stage therapeutic projects with the capital needed to advance. Grantees use our funding to build evidence of safety and efficacy, which can attract larger partners with resources for later-stage testing, regulatory processes and commercialization. Our Foundation directs donor-raised funds to the areas of most pressing patient need: from better symptom management to treatments to slow, stop or even prevent Parkinson’s progression.
“The way The Michael J. Fox Foundation does it is really best in class. The lack of bureaucracy and obstacles encourages emerging companies to seek funding and engagement and ultimately advance their projects,” said Glenn Batchelder, co-founder and former CEO of Civitas Therapeutics and member of the MJFF Board of Directors.
This “de-risking” model has advanced dozens of Parkinson’s therapies. Treatments with potential to slow or stop the disease are marching through clinical trials with new partners after early MJFF funding. Therapies targeting individual symptoms are experiencing similar momentum, and the Food and Drug Administration is currently reviewing another MJFF-funded Parkinson’s treatment for “off” episodes: APL-130277 from Sunovion Pharmaceuticals.
Other efforts from our Foundation speed these studies, as well. Educating the Parkinson’s community on “off” episodes through our communications channels helps potential trial volunteers recognize these fluctuations and seek new options. Our study matching tool Fox Trial Finder helped some participants connect directly with these trials, and we held a meeting with payers (e.g., Medicare/Medicaid and insurance companies) to discuss the impact of Parkinson’s symptoms, including “off” episodes. That knowledge may impact decisions on medication coverage.
New Option for Unmet Patient Need
The newly approved Inbrija, which Acorda expects to become available to patients in the first quarter of 2019, helps quickly alleviate symptoms of tremor, slowness and stiffness. With long-term oral levodopa use and advancing disease, these aspects of the disease can re-emerge between medication doses. These “off” episodes can greatly impact quality of life, bringing uncertainty to one’s days and limiting ability to complete daily tasks.
A 2014 MJFF survey of more than 3,000 people with Parkinson’s disease found that more than 60 percent of respondents were in an “off” state for two or more hours per day and nearly 50 percent said their “off” episodes caused them to avoid or stop activities.
Acorda Therapeutics CEO Ron Cohen notes, “It was clear thanks to the work of MJFF that ‘off’ episodes were a serious symptom for many Parkinson’s patients. Acorda committed to addressing this, and the FDA approval means patients will soon have a new treatment option.”
Acorda and The Michael J. Fox Foundation are collaborating on a number of projects, including a study of how patients, care partners and doctors discuss “off” episodes to identify gaps in communication and thereby optimum care.
This article first appeared on the Michael J Fox Foundation’s Foxfeed Blog
Living with Parkinson’s disease is a struggle against the loss of both motor and cognitive functions. One must invest effort into an action plan that reduces the impact of the disease — a rehab plan. This effort is daily (sometimes hourly) and can be exhausting.
Living with PD is like carrying a large backpack of rocks. It is at times a crushing burden that can overwhelm. Balance needs to be established in my life so that the work I do in fighting the disease does not consume me. I must spend time looking for lightness of being to balance out the heavy PD burden. I do this through a regular practice of meditation.
There are many ways to practice meditation: sitting and listening to calming music, sitting and gazing at a fireplace, practicing tai chi, or exercising with rhythmic breathing. These practices seek to help one enter the quiet mind. It is within the quiet mind that one experiences lightness of being. Meditation helps relieve stress and focus attention — both of which are of benefit to those with PD. There are books providing instructions on how to do this, but none deal directly with PD.
Practicing meditation with PD presents some unique challenges. The meditation practice starts with calming the body, and this is the first obstacle PD complicates. Repetitive motor activities like cycling, tai chi, or gardening are helpful when combined with focused breathwork.
Focused breathwork is diaphragm breathing in which you focus your full attention on the breath. Guided meditation, either from a teacher, in person, or from a recording, can help with this process of shifting attention. This shifting of attention is the second obstacle PD complicates.
Once past the first two obstacles, you should feel a little more relaxed. This relaxed state is the path leading to the door into the quiet mind, but I am prevented from going down that path by a third obstacle.
This third obstacle is heightened emotions and difficulty in regulating them. I have written about how PD heightens the impulse signals to the brain. During the meditation process, the signal-to-noise ratio changes, meaning that as one practices quieting the mind, the noise goes down and the signals connected to emotion appear louder.
The quiet mind is a mental state that silences the noise of the world, the body, and the self while at the same time maintaining a sense of peace and safety. It is something I practiced for decades and then lost touch with over the last seven years while battling PD. As my life has become stable, I am now returning to the practice and finding it much more difficult. I feel like a novice struggling with all the obstacles I used to walk around with ease. This third obstacle does impede my looking for lightness of being.
As I have helped patients to find a place of peace and safety, together we would often experience loud emotions. These are emotions connected to things we feel (consciously or subconsciously) that need attention. They are like boulders in the path, looking like obstacles blocking the way forward to the quiet mind. But one can learn to walk around them.
Most of the folks I worked with would have several boulders to walk around and needed multiple sessions to learn how to walk around them. As I write this, I remember the tender patience I should offer to myself.
Once past the boulders of emotion, you then arrive at the doorstep of the quiet mind. PD has made looking for lightness of being much more difficult for me, but not impossible. I have memories, and recently have felt glimpses of peace and deep calmness.
Seeking lightness of being ties into my New Year’s resolution. For me to quiet down the old tapes (emotional boulders in the path), I need to have a new mental state to go to. I can’t just remove the tapes and leave a void, because that void will be quickly filled back in with the old mental habits. Looking for lightness of being will be a lifetime adventure.
What ways do you practice meditation, and how have you found it to be helpful?
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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