Thursday, September 22, 2022

Apda Parkinson’s Disease Handbook

What We Learned About Parkinsons Disease And Employment At A Recent Apda Conference

Dr Gilbert Hosts Stems Cells & Parkinsons Disease with Dr Evan Snyder | APDA

I broadened my knowledge of these issues while attending the APDA Parkinsons Midwest Congress in St. Louis on March 14, a Parkinsons educational symposium organized by the St. Louis Chapter of APDA. One excellent session was entitled: Young Onset Parkinsons Disease Panel of Experts Discussing Disclosure of Diagnosis, Job Accommodations, Assistive Technology, and Disability. The three experts who presented were a social worker with expertise in the PD community, Terri Hosto, an employment lawyer, Janine M. Martin, and an occupational therapist with a focus on helping people with disabilities navigate the workplace, Debbie Turley.

Here are some of the pearls that I learned during the session that you may find helpful. And read on for some personal scenarios based on real patient stories to learn how some people with PD navigate this part of their lives.

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Use the form below to order print publications to be mailed to your address . We will send you a full set of our informational booklets and fact sheets, and youll have the option to add on a few additional titles on specific topics as well.

If you need multiple copies of any single publication please call 800-223-2732 or email .

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  • Walk Off Parkinson Fundraiser

    Walk Off Parkinsons is a free family-friendly walk and fundraising program to support those in our community impacted by Parkinsons Disease. It is organized by the Parkinsons Foundation of the National Capital Area and held in the fall at Nationals Park in DC

    You can check out more details at this link:

    And lastly we would recommend ParkinsonTV.org

    The videos on this site are from back in 2017-2018 but have some valuable information that is still relevant today. Season One has some basic information with episode 3 on nutrition being highly recommended. Find season one here: www.ParkinsonTV.org/one

    Season Two is on mental health issues with Parkinons disease including depression, anxiety and more. Find season two here:

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    Questions Or Prescription Refills

    To request a prescription refill or if you need to access our twenty-four hour on-call service, please contact our office at 638-8456.

    For additional information on our care center please call 638-7737.

    Occasionally, individuals with movement disorders require inpatient hospital care. This care is provided at Boston Medical Center. Reasons for admission include treatment of acute changes in Parkinson symptoms, medical management of Parkinsons symptoms, surgical Intervention, or the presence of co-existing conditions. Patients are admitted directly to the neurology service or to a different medical or surgical service depending on the admission diagnosis.

    In addition to care provided by the attending physician, the patient may be evaluated in the hospital by the movement disorder fellow and movement disorder attending handling consults. Deep Brain Stimulation patients are also evaluated by a movement disorder neurologist during their admission.

    The patient is evaluated and treatment recommendations are made. The patients are referred to the best available outpatient rehabilitation services as available and appropriate. Several of the movement disorder physicians may continue to follow the patients in the rehabilitation facilities with which Boston Medical Center is affiliated.

    Boston Medical Center has a comprehensive inpatient guide which can be viewed on their website.

    Physiologic Tremor And Enhanced Physiologic Tremor

    Presentation  Advances in Parkinsons Disease

    Everyone has some small degree of tremor that may not be physically apparent but can be recorded electrophysiologically. This tremor is known as physiologic tremor. In some people this tremor can worsen in the setting of stress, anxiety or with stimulants such as caffeine and is known as enhanced physiologic tremor. Enhanced physiologic tremor is not a progressive disorder and needs no treatment.

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    Not Pd Specific But Still Great Sites For Resources

    • Family Caregiver Alliance FCA is an organization that helps provide services to family caregivers of adults with physical and cognitive impairments, such as Parkinsons, stroke, Alzheimers and other types of dementia. Though based in the Bay Area there are resource to help find organization and services in other states.
    • AgingCare provides forums for caregivers to share experiences, resources to help find local service providers as well as articles and guides to help families find answers
    • Caregiving Resources and information provided by the AARP
    • com Information on senior care and living options

    American Parkinson Disease Association :

    There are no local chapters nearby with this national organization, but it is a wonderful resource if you are looking for more information on Parkinsons Disease and research.

    They have put out a Parkinsons Disease handbook and other free downloadable booklets you can find HERE.

    You can also find an assortment of webinars on various topics HERE.

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    Parkinson Foundation Identification Card

    The National Parkinson Foundation card features a medical alert.

    I have Parkinsons disease which could make me move slowly and have difficulty standing or speaking. I am not intoxicated. Please call my family or physician for help.

    Space is provided for name, emergency contact, and physician. This identification card has extensive information on medications that may be contraindicated in PD as well as considerations if the patient has a brain device.

    The card template is available here.

    Cognitive And Psychiatric Features Distinguish Subtypes

    Let’s Keep Moving with APDA: Movement & Occupational Therapy

    Psychiatric and cognitive function distinguish the psychiatric & motor and cognitive & motor subtypes. In fact, depression, executive function, and apathy best discriminated subtypes. Interestingly, the psychiatric & motor and cognitive & motor subtypes did not differ in the presence of anxiety or hallucinations, further reinforcing depression and apathy as key psychiatric features. Despite the high rate of psychiatric comorbidities with PD and important treatment implications, few multidomain subtyping studies included psychiatric measures., , Tremor did not discriminate between subtypes and bradykinesia contributed more to subtype distinctions than PIGD, suggesting the classic tremor/PIGD dichotomy is insufficient. In fact, we achieved 98% classification accuracy whereas approximately 20% remained unclassified or indeterminate using the tremor/PIGD classification. These results emphasize the independent and important contributions of psychiatric and cognitive attributes to the clinical presentations of PD.

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    Rem Sleep Behavior Disorder

    In vivid dreaming states most peoples bodies are still. However people with RBD lack muscle paralysis resulting in their acting out their dreams. This can include talking, screaming, shouting, hitting, punching or kicking, even propelling them out of bed. This can be scary and dangerous if they strike their partners or other bedside objects involuntarily. RBD is common in and can begin long before the onset of declining motor function. Fortunately it is also a very treatable condition.

    Parkinsons Foundation Mid Atlantic:

    This National PD organization has a local presence in the DC and Baltimore area. Our favorite feature of this website is the Parkinsons Library. You can search topics that you are interested in or pick from a wide selection of topics. More information than you could ever imagine, including an entire section devoted to caregivers.

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    Restless Legs And Restless Legs Syndrome

    With restless legs, a person has unpleasant crawling, pulling or itchy feelings in the muscles or bones of the legs. These sensations occur particularly when lying down in bed, and can occur with sitting and relaxing in the evening later on in the disease. These sensations improve or disappear when walking.

    Restless Legs Syndrome consists of several problems. The unpleasant sensation of restless legs is the most common symptom, but some people may have involuntary movements during sleep, myoclonic jerks, inner restlessness, and dystonia. RLS may begin before age 20 as a mild disorder and most people seek medical advice in midlife when symptoms worsen.

    For more information, visit the Restless Legs Syndrome Foundation at www.rls.org.

    Continuing To Work With Parkinsons Disease

    APDA I &  R Staff Organize Support Group Facilitator ...

    A frequent issue that many people with Parkinsons disease encounter is navigating their continued employment. This is a fraught issue for many and, like most issues affecting people with PD, is highly variable depending on each persons unique circumstances. There are many aspects to consider:

    • Should I tell my employer that I have PD? If so, when?
    • Are there ways to lengthen my ability to work despite my PD?
    • When is it time to stop working entirely?
    • When I reach this point, what are my options for disability payments?

    The good news is that many people are able to continue with their work for quite some time after diagnosis if they wish to, and with the right information and support, many people can extend their time in the workforce a fair amount. And when employment is not feasible, there are resources to help navigate the disability process. My goal is that this blog helps you feel more informed and confident so you can make the decisions that feel right for you or your loved one.

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    Groups For Care Partners

    Support groups may also be beneficial to care partners. Care partners must remember to look for themselves as well as their loved ones, according to the Parkinsons Foundation.

    For individuals caring for someone with Parkinsons disease, care partner support groups can provide emotional support as well as practical advice. A person can inquire with their doctor about local support groups or look them up online.

    The following organizations and websites provide assistance to care partners:

    • The APDA: The APDA provides resources and support for care partners as well as people with Parkinsons disease.
    • The Parkinsons Foundation: This organization also provides information for caregivers.
    • The Family Caregiver Alliance: This organization provides services for caregivers and the people who receive their care. FCA CareNav is an online resource for family caregivers.

    What To Expect At Home

    Over time, symptoms get worse and it becomes more difficult to take care of yourself.

    Your doctor may have you take different medicines to treat your Parkinson disease and many of the problems that may come with the disease.

    • These medicines can cause severe side effects, including hallucinations, nausea, vomiting, diarrhea, and confusion.
    • Some medicines can lead to risky behaviors such as gambling.
    • Make sure you follow instructions. DO NOT stop taking medicines without first talking to your doctor.
    • Know what to do if you miss a dose.
    • Keep these and all other medicines stored in a cool, dry place, away from children.

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    Writers Cramp And Musicians Dystonia

    Writers Cramp is a focal dystonia of the finger, hand or forearm in which there is a simultaneous contraction of those muscles while writing or doing specific skilled tasks. Writers cramp may begin after repetitive use and is therefore often considered an occupational dystonia, more commonly experienced by typists, draftsmen, musicians and sportsmen.

    When musicians are affected, it is called musicians dystonia . When the muscles involved are around the mouth , it is called embouchure dystonia.

    For more information visit the Dystonia Medical Research Foundation www.dystonia-foundation.org.

    A Dancers Perspective On Movement & Parkinsons

    Dr. Gilbert Hosts: Cognition & Parkinson’s disease with Kathleen Poston, MD | APDA

    This 2-hour lecture by Stanford movement disorder specialist Helen Bronte-Stewart, MD, provides an overview of the neuro-motor functioning of the human body and how Parkinsons disease develops, before explaining the evaluation process for deep brain stimulation, the surgical process, what to expect during post surgery/recovery, and programming of the device.

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    Akinesia / Bradykinesia / Hypokinesia

    Akinesia means absence of movement. Bradykinesia means slowness of movement. Hypokinesia means decreased amplitude or range of movement. These three terms are commonly grouped together and referred to as bradykinesia. Bradykinesia is a prominent feature of parkinsonism and is mild in early disease stages but becomes more severe in advanced stages of parkinsonism.

    Ataxia / Dysmetria / Asynergia

    Ataxia is an unsteady and swaying walk, often with feet planted widely apart. People have difficulty walking a straight line with their heel touching the toe of the shoe in front . Ataxia can occur in a number of neurologic conditions.

    Dysmetria is misjudging the distance to a target. A person with dysmetria will have problems reaching out and accurately touching a targeted object.

    Asynergia is a breakdown of movement, so that movements of the arms and legs become irregular and clumsy.

    For more information, visit the National Ataxia Foundation website at www.ataxia.org.

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    American Parkinson Disease Association

    The American Parkinson Disease Association is the largest grassroots network dedicated to fighting Parkinsons disease and works tirelessly to help the approximately one million with PD in the United States live life to the fullest in the face of this chronic, neurological disorder. Founded in 1961, APDA has raised and invested more than $226 million to provide outstanding patient services and educational programs, elevate public awareness about the disease, and support research designed to unlock the mysteries of PD and ultimately put an end to this disease. To join the fight against PD and to learn more about the support APDA provides nationally through their network of Chapters and Information & Referral Centers, as well as their national Research Program and Centers for Advanced Research, please visit www.apdaparkinson.org

    Mapping The Future Of Parkinson’s Disease

    APDA

    PD GENEration: Mapping the Future of Parkinsons Disease is a Parkinsons Foundation initiative that offers genetic testing and genetic counseling at no cost for people with Parkinsons disease . When you participate, you can help scientists in their journey to advance understanding of PD, leading to new, more effective PD therapies.

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    Distinct Subtypes Or Different Disease Stages

    Symptom duration and motor severity did not differ between the cognitive & motor and psychiatric & motor subtypes, suggesting that these subtypes do not merely reflect disease stages. Further, the cognitive & motor and psychiatric & motor subtypes displayed similarly high mortality risks, but different rates of dementia. Similarity in DBS rates across subtypes also argues against a disease stage model. While it remains possible that the motor only subtype represents an early disease stage, the cognitive & motor and psychiatric & motor do not appear to be sequential PD stages with cumulative symptomatology. Additional longitudinal analyses are required to determine subtype stability and progression. Information regarding neurobiological changes associated with each subtype also may offer insight into subtype differences and progression. However, in the final stages of disease , PD subtypes may converge in clinical manifestations and neuropathology. In vivo neurobiological measures will be crucial for characterizing the temporal progression of disease pathology in relation to clinical progression.

    Pd Subtypes Predict Clinical Milestones

    Prospective, longitudinal followup establishes the prognostic utility of these PD subtypes for clinical milestones. The cognitive & motor subtype exhibited faster dementia conversion as expected, even after accounting for age, symptom duration, and baseline cognitive status. Cognitive impairment is well established to precede and predict dementia., Surprisingly, both the cognitive & motor and psychiatric & motor subtypes had increased mortality rates, regardless of symptom duration. However, there were no subtype differences in DBS rates. Increased dementia and mortality risk for the cognitive & motor subtype may be due, in part, to older age at onset and worse cognition. Previous studies also report subtype differences in progression,, , with cognitive and nonmotor symptoms, rather than motor, as the strongest predictors of prognosis. However, prognosis was primarily based on a global composite score and not specific to any clinically relevant milestone. One other prospective study reports mortality rates, with increased mortality associated with more severely affected subtypes suggesting possible disease stage effects. Conversely, our data suggest that presence of cognitive or psychiatric problems increases mortality risk, regardless of age or symptom duration. Previous research indicates that psychosis increases mortality risk,, but our novel results suggest that depression and apathy also increase mortality risk in Parkinson disease.

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    What Metrowest Caregivers Should Know

    Help is close by. The American Parkinson Disease Association has a Massachusetts chapter located in Boston that states its goal as support the national mission to Ease the Burden and Find the Cure through education, program development, support group assistance, fundraising and community involvement.

    The APDA Massachusetts chapter can be contacted at:72 East Concord Street, C3Boston, MA 02118

    Civil War memorial on Franklin Common /Photo by Douglas Flynn

    Boston is also home to some of the top treatment and research facilities for Parkinsons disease. That includes the Parkinsons Disease and Movement Disorders Center at the Boston University School of Medicine, which has been designated an Advanced Center of Parkinson Research and a Parkinsons disease Information and Referral Center by the APDA.

    The Information & Referral Center was established in 1980 and 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 and Referral Center include:

    • A telephone helpline
    • A comprehensive resource referral network
    • Support group assistance
    • Counseling and guidance
    • Training and support for healthcare professionals

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