For more information about the author, click to view their website: ADPA Information and Referal Center
A diagnosis of Parkinson’s is a life-changing moment. However,
with advances in treatment and the right support there is much an individual
with Parkinson’s disease can do to live every day to the fullest. Here in
Massachusetts, we have many resources to help navigate the PD diagnosis and get
the information you need.
The American
Parkinson Disease Association (APDA) is the country’s largest grassroots
organization serving those touched by Parkinson’s disease. What makes APDA
unique is that we are in cities, towns,
and communities across the U.S. In Massachusetts there is a APDA Chapter,
Information & Referral Center, Centers for Advanced Research, Specialized
programs in Young Onset, Veterans and Rehabilitation Resources, and countless
support groups, we are able to quickly reach people and connect them to
resources that will provide the best outcomes as they navigate Parkinson’s
disease.
Parkinson’s
disease is a progressive neurological movement disorder. Over one million
people live with Parkinson’s. The results of a new study show that the
incidence of Parkinson’s disease (PD), or the number of new cases diagnosed per
year, is 50% higher than previously estimated. Instead of past estimates of
60,000 new cases of PD diagnosed per year, the new study determined that there
are approximately 90,000 new cases of PD diagnosed in the US per year. It can begin with a tremor, difficulty writing, stooped posture,
stiff muscles, or slightly slurred speech; symptoms are different for every person. If
you have questions reach out to your doctor.
APDA’s
mission is to provide information, education, and support to all impacted by the
disease and to fund scientific research into the causes, prevention, treatments
and ultimately the cure. We take pride
in the fact that we are in your community and many others across the country
serving people with Parkinson’s disease to provide support from the day of
diagnosis throughout the Parkinson journey. We have also been a funding
partner in most major Parkinson’s disease discoveries, and we will continue to
fund research initiatives that can stop the devastation of living with this
disabling disease.
The
last few years have been especially challenging for the PD community and APDA
has worked hard to develop programs and services that the community can access
from the safety and comfort of their home. APDA has developed a library of
virtual education topics, virtual support groups, caregiver programs and
continues to operate the incredibly valuable APDA information and referral line
that provides expert guidance without charge. APDA is here to help with the
following programs some in person and others virtually:
·
Health and wellness initiatives delivering
programs to help people maintain independence and optimism starting at diagnosis.
·
Education and support programs connecting
people with Parkinson’s in local communities.
·
Expedited and innovative research to
develop promising clinical approaches and better outcomes and funding the next generation of scientists dedicated
to finding new treatments and a cure.
For
information about Massachusetts programs or to become a volunteer contact: APDA Information & Referral Center
at Boston University School of Medicine Boston, MA 02118 and at 617-638-8466 or
800-651-8466 apdama@apdaparkinson.org & www.apdama.org This article was submitted by Bill Patjane- Regional Director of the APDA- Northeast bpatjane@apdaparkinson.org (617) 352-9330
Parkinsons Disease Early DetectionApril is Parkinsons Awareness Month. Parkinsons disease is the second most common neurodegenerative disease, after Alzheimers. Most people will develop symptoms of Parkinsons disease around age 60. At Healthcare Network, within our senior primary care services, we watch for signs and symptoms of Parkinsons disease as well as all potential illnesses that impact seniors.Early detection of Parkinsons disease, a progressive neurodegenerative disease that affects more than 1 million Americans, is important to slowing disease progression. But many other illnesses share similar symptoms with Parkinsons disease, including slowness, stiffness, tremors and imbalance. Age can make people more prone to falls and certain diseases, even without Parkinsons disease.Sometimes, people dismiss early symptoms of Parkinsons as the effects of normal aging. Therefore, it is especially important for seniors to establish a relationship and health history with a primary care team who can detect potential health problems early before they become severe. About 85% of older adults have at least one chronic health condition. Sixty percent have at least two chronic conditions.Importance of a Primary Care Physician in Treating Parkinsons DiseaseSeveral healthcare professionals are needed to effectively manage Parkinsons disease and its impacts on quality of life, according to ParkinsonsDisease.net. For example, primary care providers focus on immediate and overall health needs while helping patients manage symptoms of the disease. Primary care providers often also coordinate care with other health professionals including neurologists and movement disorder specialists who assess disease progression and prescribe medications.Overall, primary care physicians (PCPs) play a key role in senior care because they know the patients history and background. The PCP is often the first point of contact for the patients and provides comprehensive care for chronic, preventive and acute conditions, according to ParkinsonsDisease.net.In addition, recent surveys have shown that strong patient-physician relationships result in healthier outcomes. Your PCP can connect the dots, spending less time on your past and more time on the future.Research has shown that people who live in states that have more primary care physicians have better health outcomes. This includes fewer deaths from cancer, heart disease or stroke. In a study published in the Journal of the American Medical Association, respondents with primary care received more high-value care compared with those without primary care. Enhanced treatment included filling prescriptions, routine preventive visits and screenings.According to Harvard Health, PCPs work in teams that keep the patient as the center of all diagnostic and treatment activities. The explosion of medical knowledge and treatment alternatives makes it important to have a primary care provider to interpret and advise on the best course of action.Senior Care Helps to Manage Multiple ConditionsParkinsons disease occurs when nerve cells around the brain that controls movement become impaired and/or die. As the disease progresses and changes, so do care needs. Establishing care with a PCP provides continuity and consistency in care that can help Parkinsons patients avoid using costly urgent care or emergency rooms for acute needs.In addition, many people with Parkinsons disease experience mood disorders because of their condition. Our integrated mental and behavioral health model, where medical and mental health professionals work side-by-side, allows these concerns to be addressed seamlessly during primary care visits.Another advantage of having a dedicated PCP when dealing with Parkinsons is they can watch for the impact of medication changes, infections, dehydration, sleep deprivation, stress and other medical conditions that can worsen Parkinsons disease symptoms. A PCP can consider other conditions and medications and adjust with the patients overall health in mind.People with Parkinsons can expect to live almost as long as those who do not have the disorder. Medications, as well as physical and occupational therapy, can improve a persons quality of life. Early detection and coordinated care are key to reducing complications. By being aware of the common chronic conditions associated with aging, your PCP can take steps to practice smart preventative care, manage complex chronic conditions like Parkinsons and improve health outcomes.Make an AppointmentTo make an appointment at one of our many locations with a care provider, call 239-658-3000. Already a patient of Healthcare Network? Visit our secure Patient Portal to access medical information, request appointments, and manage prescriptions 24/7. Learn more.About AuthorDr. Reiner Ramirez is a Healthcare Network family care provider who focuses on specific health concerns faced by seniors. Healthcare Network provides integrated health where medical and mental health professionals work side-by-side to address patients physical, mental and emotional health.
Non-contact boxing inspired classes can delay, reduce, and even reverse the symptoms of Parkinsons Disease.We are learning every day that there are ways in which people with Parkinsons disease can enhance their quality of life and even build strength, flexibility and speed! By exercising with coaches who know the ropes, you can fight your way out of the corner and start to feel and function better.These classes have proven that anyone, at any level of Parkinsons, can actually lessen their symptoms and lead a healthier and happier life.Why Boxing for Parkinsons?Various studies in the 1980s and 1990s supported the notion that rigorous exercise, emphasizing gross motor movement, balance, core strength, and rhythm, could favorably impact range of motion, flexibility, posture, gait, and activities of daily living. More recent studies, most notably at Cleveland Clinic, focus on the concept of intense forced exercise, and have begun to suggest that certain kinds of exercise may be neuro-protective, i.e., actually slowing disease progression. Discovery of a cure may be many years away but there is evidence that progress is made in all stages of the disease by those participating in the Rock Steady Boxing program.The Parkinsons ChallengeParkinsons disease is a degenerative movement disorder which can cause deterioration of motor skills, balance, speech and sensory function. Rock Steady Boxing is the first program in the country dedicated to the fight against Parkinsons. In our program, exercises are largely adapted from boxing drills. Boxers condition for optimal agility, speed, muscular endurance, accuracy, hand-eye coordination, footwork and overall strength to defend against and overcome opponents. At Rock Steady Boxing, Parkinsons disease is the opponent. Exercises vary in purpose and form but share one common trait: they are rigorous and intended to extend the perceived capabilities of the participant.Types of Rock Steady Boxing ClassesTraining classes include an exercise program that attacks Parkinsons at its vulnerable neurological points. While focusing on overall fitness, workouts include: focus mitts, heavy bags, speed bags, double-ended bags, water bags, core work, cognitive activities, voice activation and circuit weight training. No boxing experience is necessary and people of all ages are invited to participate. There are four levels of classes offered, depending on the participants level or Parkinsons and overall fitness. All classes at Rock Steady Boxing SRQ are mixed-level at this time.Medical Evidence Supporting Rock Steady BoxingThe value of exercise has been corroborated in several studies, including some at Lakehead University in Ontario and University of Utah in Salt Lake City. According to a Cleveland Clinic study, aerobic fitness can be improved in Parkinsons patients following forced and/or voluntary exercise. Studies are showing that exercise induces brain repair and accompanying behavioral recovery. Some suggest that continuous, intensive training may confer neuro-protection, and subsequently, slow, stop or reverse the progression of Parkinsons or promote neuro-restoration. (References to any studies are for informational purposes only and do not imply endorsement of Rock Steady Boxing by the researchers.)Because of the promising results seen through Rock Steady Boxing, the organization was selected to be a part of research to document the impact of boxing and rigorous exercise on the progression of Parkinsons. Rock Steady Boxing has also drawn the attention of university researchers who are in the process of quantifying and evaluating the results in people who have continued with Rock Steady Boxing.Can Anyone with Parkinsons Participate?Nearly everyone with Parkinsons disease can participate and receive benefit from Rock Steady Boxing. An intake evaluation process is conducted prior to the first class to determine the boxers ability and evaluate balance risks. Some participants will require a caregiver partner to assist in class. Individuals of all ages are benefiting from the Rock Steady Boxing program.We strongly encourage you to discuss Rock Steady Boxing participation with your physician prior to your first workout.Rock Steady SRQ Class FormatOur typical class has the following format:Warm-up including voice activation. We warm up our bodies and voices together.Glove up while coach Leslie goes through the boxing combos for the day.Go to bags and start punching. We normally stay at each bag for four rounds, consisting of two punching and two body-weight exercise rounds.Take off gloves, get some water and rest a few minutes.Strength workout consisting of gross motor movements, balance, cardio and core work with a fun station or two mixed in!We end class down on the floor with stretching and a short meditation for the last 15 minutes of class.Circle up together for our cheesy cheer and head out the door.Rock Steady Boxing HistoryRock Steady Boxing, the first boxing program of its kind in the country, was founded in 2006 by former Marion County (Indiana) Prosecutor, Scott C. Newman, who is living with Parkinsons. Rock Steady Boxing initially began through the friendship of two men, Scott Newman and Vince Perez, after Scott had been diagnosed with early-onset Parkinsons at the age of 40. Refusing to let his friend go down without a fight, Vince turned to his experience as a Golden Gloves boxer to design a program that attacks Parkinsons at its vulnerable neurological points. His intuitive insight is now proven to have merit through an increasing body of medical research. Realizing that their experience might be replicated for others, Scott and Vince founded Rock Steady Boxing as a 501 (c)(3) nonprofit organization. As word of this unique program spread and the demand for the classes increased, Rock Steady Boxing created classes to meet the fitness levels at all stages of Parkinsons from the newly diagnosed to those who had been living with it for decades plus.
Parkinsons: What do I need to know?April is Parkinsons Awareness month, with April 11 being World Parkinsons Day. Parkinsons is a type of dementia that impacts motor function and is degenerative. Currently there is still no known cure for Parkinsons disease. What is Parkinsons disease?According to the International Parkinson and Movement Disorder Society (movementdisorders.org), Parkinsons disease is a neurogenerative disorder characterized primarily by the loss of dopamine neurons in the substantia nigra part of the brain. SymptomsGenerally, symptoms develop on one side slowly over years, but the progression may differ due to the diversity of the disease. People with PD may experience the following: tremor, mainly at rest (described as pill rolling tremor in hands bradykinesia limb rigidity gait and balance problems.Non-motor symptomsCommon Neuropsychiatric symptoms are: mood disturbances cognitive changes autonomic dysfunction pain sleep issues anxiety apathyPrevalence is approx. 200 cases in 100K population, and about 25 cases per 100,000 population. When motor manifestations appear, people with PD have lost more than 50% of nigral dopamine cells suggesting that pathological changes may begin several decades before the appearance of clinical signs. Causes of Parkinsons diseaseIt is believed that Parkinsons disease is multifactorial. Contributing factors are: Hereditary predisposition Environmental toxins Aging Genetic mutations (GBA, LRRK2, PRKN, SNCA)DiagnosisDiagnosis is still clinical and based on motor manifestations. A brain MRI or CT and molecular imaging of the striatum may be performed to support clinical evaluation.TreatmentLevodopa has remained the cornerstone of PD treatment for more than 50 years. The challenge is after a few years of treatment the benefit lessons and motor complications appear in many patients due to disease progression. The introduction of many other medications including inhibitors and dopamine agonists have been developed due to this decline. More recently, surgical and infusion therapies have become available to improve management in selective patients with motor complications. Surgery options include: deep brain stimulation. drug infusions based on the possibility to deliver continuously either levodopa or apomorphine.Treatment noted is based on research according to Marcello Merello, MD Director of Neuroscience Dept. Head Movement Disorders Section Institute for Neurological Research Raul Carrea (FLENI) 2019 Updated by Angelo Antonini, MD, PhD Professor, Department of Neuroscience University of Padula, Italy.Parkinsonism (movementdisorders.org)A defining feature of Parkinsonism is bradykinesia (slowness with decrement and degradation of repetitive movements (Fatigue). Subtle bradykinesia is known to occur in the normal elderly population. The most common neuro degenerative cause of parkinsonism is Parkinsons disease. Other causes include multiple system atrophy, progressive supranuclear palsy, and corticobasal degeneration. Often called Parkinson-plus syndromes, they do not respond as well to dopaminergic treatments and generally have worse prognosis compared to typical PD. Parkinsonism can also be symptomatic because of various vascular drug related, infectious, toxic, structural, and other known secondary causes. Vascular Parkinsonism tends to have a lower body emphasis with gait disturbance and concomitant cognitive impairment.Where to get helpWe are fortunate to have a Dallas Area Parkinsons Society (DAPS). The DAPS provides not only information, but also hosts exercise groups and activities throughout the metroplex. Several churches and senior centers also host Parkinson support groups and wellness classes. Dallas Area Parkinson Society | Home (daps.org)Parkinson's Disease Support Groups (verywellhealth.com) American Parkinson Disease Association DailyStrength Parkinsons Disease Support Group Parkinsons Foundation PatientsLikeMe Parkinsons Movement Disorder and Alliance Parkinsons Community NeuroTalkAdult Day Cares and Assisted Living Communities often provide respite services for those with Parkinsons or other conditions requiring activities of daily living (ADL) care support.How can I help?The Michael J Fox organization provides free scratch and sniff tests that help researchers learn more about Parkinsons risks and contribute to research on the disease. (michaeljfox.org)Regardless of if you are reading this because you or a loved one has been impacted by Parkinsons disease or if you are just wanting to learn more, we hope that you are able to get the support you need and/or find ways to help cope Britt Hemsell Ruby Care Senior Living Advisor & Blog ContributorResources:International and Movement Disorder Society https://www.movementdisorders.org7 Parkinson's Disease Support Groups of 2023 (verywellhealth.com)American Parkinson Disease Association https://www.apdaparkinson.org/community/Dallas Area Parkinson Society | Home (daps.org)Some Adult Day Cares in DFW: Friends Place Adult Day Care Richardson 972-437-2940
The Massachusetts Chapter of the American Parkinson Disease Association (APDA) works tirelessly every day to support and empower those in our community who are impacted by Parkinsons disease (PD). We promote hope and optimism through innovative services, programs, education, and support, while also funding vital research. We are here to help you and your loved ones every step of the way.Services we provide:Educational programs and resourcesSupport groupsExercise and wellness classesInformation and referralsFinancial support programsand much moreAPDA Information & Referral Center at Boston University Medical CenterThe Information & Referral Center, located at Boston University Medical Center, was established by the American Parkinson Disease Association (APDA) in 1980. This Center serves as a resource for those with Parkinsons disease and their loved ones as well as healthcare providers. Patients, caregivers, healthcare providers and the greater community can receive support regardless of their affiliation with Boston University Medical Center or any other medical facility.Services provided by the APDA Information & Referral Center include:Telephone helpline (617-638-8466 or 800-651-8466)Comprehensive resource referral networkSupport group assistancePublicationsEducational symposiaCounseling and guidanceInformation updates to those on the Centers mailing list through newsletters and other special event announcementsTraining and support for healthcare professionalsOther services provided by the Information & Referral CenterImplementation of regional conferencesParticipation in community awareness and public relations activitiesMonthly electronic newsletter