NJ MSA Conference on Sat March 19 – Streamed Live Online

Saw this note posted to the ShyDrager Yahoo!Group by Pam Bower about an MSA conference this Saturday in NJ from 10am to 4:30pm NJ time.  No need to sign up in advance.  The conference will be streamed live online at msanj.org.  And apparently the “unedited recording” will remain available on their website thereafter.

Here’s the post:  “Don’t miss this SPECIAL MSA Support Conference event live streamed on the internet on Saturday March 19th beginning at 10 a.m. Eastern time. Featuring presentations by knowledgeable physicians, scientists, other health professionals, hospice, former caregivers, advocates and board members of host organization MSA New Jersey along with The MSA Coalition. ”

View the full conference agenda here:

Thanks to Cynthia Roemer and the MSA New Jersey organization for hosting this event.

[A recording of the six presentations at the conference is here:  https://www.youtube.com/watch?list=PLA6kMi603zp1iEqAyTDPvYrm_FYey_yJO&v=RE52kV6LVCQ]


Short excerpt on PSP (from frontotemporal dementias document)

Someone recently shared this long document about frontotemporal dementias with me.  I’m not sure who wrote it.  The person who shared it thought Teepa Snow might’ve written it.   See  http://camanocenter.org/wp-content/uploads/2014/01/Frontal-Temporal-Lobe-Dementias.pdf

PSP is considered a type of frontotemporal dementia.  Here’s the very short excerpt on PSP from the document:

Progressive Supra-nuclear Palsy
* Movement and motor problems with balance and walking
* Problems with controlling smooth eye gaze and eye movements
* Problems closing eyes, even when trying to keep them open
* Problems with being able to make and keep eye contact
* Problems with swallowing and aspiration pneumonia early in the disease
* Apathy – lack of emotions, flat and none emotional, no energy and no interests
* Irritable and angry outbursts
* Depression
* Rapidly progressing dementia – spreading through the brain over months to a few years

I agree with all of this except the last bullet point.  Not everyone with PSP experiences dementia.  And, when the dementia is present, I would not call it “rapidly progressing.”  “Slowly progressing” – maybe.

And, I’ve copied below two excerpts about a diagnostic work-up and what should be done routinely.



Diagnostic Work-Up – What Should Be Done?

  • Consider seeking out a specialist in dementia evaluation, if symptoms are not typical for Alzheimer’s disease, as missed or mis-diagnosis is common
  • Complete physical and neurological examination
  • Complete medical history and history of symptom development from the person but also family or care provider (in private setting)
  • Neuro-psychological testing
  • Functional abilities in attention, language, visual-spatial skills, memory and thinking/reasoning skills, fine and gross motor skills.
  • Brain imaging preferably a PET scan as it will show symptoms of specific areas of functional loss before the structures shrink a lot. If a PET scan is not possible, then at least a CT or MRI scan
  • Blood tests, and other laboratory tests to rule out other possibilities

What Should Be Done Routinely?

  • Complete durable healthcare and financial power of attorney decisions and paperwork
  • Complete advance directive planning and financial planning
  • Develop and use daily routines that include:
    • Exercise – aerobic, strengthening, coordination, and flexibility
    • Self-care – modify help as skills are lost
    • Leisure activities – make modifications as skills are lost
    • Work or productive activities – abilities may be lost early in the disease, use of time will need to be addressed
    • Rest times – breaks in the action, sleep will need to be structured in and additional caregiver may be needed at night to ensure that the primary caregiver gets rest when insomnia is problematic
    • Time away for the care partner
    • Time out of the home – with friends or neighbors when mobility is adequate
  • Get a speech therapy consult if language skills are being affected
  • Check out Safety issues with skilled health professionals (OTs or PTs) – modify the home for specific safety concerns that are identified
  • Check out the need for rehabilitation for mobility and functional losses (OT, PT, Speech)
  • Continue familiar activities and groups (watching versus doing) – consider providing some education and training for others to help them in helping the person feel included and successful
  • Look at care options and locations for possibilities as needs and abilities change
  • Get counseling and support if mood and personality changes are affecting relationships and roles in the family and community

Overview of atypical Parkinsonian syndromes – Johns Hopkins

Someone recently alerted me to the fact that Johns Hopkins Medicine has an online library of neurological conditions.  Here’s a link to their short overview of four atypical Parkinsonian disorders — dementia with Lewy bodies (DLB), progressive supranuclear palsy (PSP), multiple system atrophy (MSA), and corticobasal syndrome (CBS):


My two favorite atypical parkinsonism overviews are listed on our webpage here:


I’ve copied Johns Hopkins page below.



What are atypical Parkinsonian disorders?
Johns Hopkins Medicine

Atypical Parkinsonian disorders are progressive diseases that present with some of the signs and symptoms of Parkinson’s disease, but that generally do not respond well to drug treatment with levodopa. They are associated with abnormal protein build-up within brain cells.

The term refers to several conditions, each affecting particular parts of the brain and showing a characteristic course:

  • Dementia with Lewy bodies, characterized by an abnormal accumulation of alpha-synuclein protein in brain cells (“synucleinopathy”)
  • Progressive supranuclear palsy, a rare disorder involving tau protein buildup (“tauopathy”) affecting the frontal lobes, brainstem, cerebellum and substantia nigra
  • Multiple system atrophy, another synucleinopathy that affects the autonomic nervous system (the part of the nervous system that controls internal functions such as heartbeat and digestion), substantia nigra and at times the cerebellum
  • Corticobasal syndrome, a rare tauopathy that typically affects one side of the body more than the other and makes it difficult for patients to see and navigate through space

What are the symptoms of atypical Parkinsonian disorders?

Like classic Parkinson’s disease, atypical Parkinsonism disorders cause muscle stiffness, tremor, and problems with balance and fine motor coordination.

Patients with atypical Parkinsonism often have some degree of difficulty speaking or swallowing, and drooling can be a problem. Psychiatric disturbances such as agitation, anxiety or depression may also be part of the clinical picture.

Dementia with Lewy bodies (DLB) can cause changes in attention or alertness over hours or days, often with long periods of sleep (two hours or more) during the day. Visual hallucinations — typically of small animals or children, or moving shadows in the periphery of the visual field — are common in DLB.

Patients with progressive supranuclear palsy (PSP) may have difficulties with eye movements, particularly when looking downward, and with balance — when descending stairs, for instance. Backward falls are common and may occur during the early course of the disease. PSP is not usually associated with tremor.

Multiple system atrophy (MSA) can affect autonomic function, with urinary urgency and incontinence, constipation, lightheadedness when standing (orthostasis) and significant erectile dysfunction in men. Patients may experience color and temperature changes in hands and feet, such as redness and coldness. When MSA affects the cerebellum, patients may have ataxia, characterized by a wide-based unsteady gait, and lack of coordination in the hands, feet or both.

The symptoms of corticobasal syndrome (CBS) often appear only on one side of the body. Dystonia (abnormal posture of the limbs) and myoclonus (sudden jerking) may occur. Some patients may have difficulties with simple arithmetic early on.

Patients may suffer from an inability to demonstrate or recognize the use of common objects. For instance, a CBS sufferer may not be able to show how a hammer is used to strike a nail or how a spoon is used to scoop food and direct it to the mouth.

Another unusual symptom of CBS is alien limb phenomenon, in which the patient experiences his or her arm or leg as a foreign structure over which the patient has no control. Patients may repeatedly pick at buttons or zippers on their clothing without realizing it. Alien limb phenomenon can cause patients great fear and distress.

What are the risk factors of atypical Parkinsonian disorders?

Atypical Parkinsonisms are not genetic. Most cases arise from unknown causes, though some may be caused by long-term drug exposure or trauma. DLB is second only to Alzheimer’s disease as a cause of dementia in the elderly, and most commonly affects patients in their 60s.

Atypical Parkinsonism Diagnosis

To diagnose an atypical Parkinsonism in a patient exhibiting symptoms, the doctor will start with a thorough history and neurologic exam, and determine the next course of action if Parkinson’s disease drug therapy does not resolve the problem.

He or she may use imaging techniques such as positron emission tomography (PET), magnetic resonance imaging (MRI) or methods that track dopamine transport in the brain (DAT-SPECT.)

Atypical Parkinsonism Treatment

Although research is deepening medical understanding of these disorders, atypical Parkinsonisms are progressive and as yet there are no treatments that effect a complete cure.

Supportive physical and occupational therapies can help patients cope with their symptoms, and maximizing the patient’s ability to swallow is particularly important. Psychiatric manifestations of these diseases may respond to medication.