Category Archives: MSA

Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast

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Parkinson’s Caregivers Summit, 9/19, 9am-3:30pm PT, via webcast

Join in this Parkinson’s caregivers summit on Monday, September 19th, 9am to 3:30pm PT via webcast.  Only the CareMAP part of the agenda is obviously Parkinson’s-specific, so I believe most of the summit will be of interest to those in the Brain Support Network community.

The World Parkinson’s Congress will start in Portland on September 20th.  The day before the WPC, the National Parkinson Foundation (NPF) is hosting a PD caregivers summit in Portland, from 9am to 3:30pm.  NPF aims to have caregivers “share experiences and everyday strategies for coping with the complex problems that arise as a result of PD.”

Anyone can participate in the summit via webcast.  During the webcast, there will be two one-hour gaps during which break-out sessions are held.

REGISTER

Register here for the webcast:

www.parkinson.yourbrandlive.com/c/summit

AGENDA

9:00 – 9:20 am
Welcome
Susan Imke, FNP, GNP-C, Kane Hall Barry Neurology (Bedford, TX)

9:20 – 10:00 am
Maintaining Dignity and Identity
Susan Hedlund, MSW, LCSW, Oregon Health & Science University (Portland, OR)

10:00 – 10:40 am
Caregiving: The Emotional Rollercoaster
Jan and Seale, poet caregiver advocate (McAllen, TX)

10:40 – 10:50 am
Coping Strategy: Yoga & Stretching
Kaitlyn Roland, PhD, University of Victoria (British Columbia, Canada)

10:50 – 11:05 am
Break

11:05 – 12:00 pm
Breakout 1 (to be announced soon)

12:00 – 12:50 pm
Lunch and Networking

12:50 – 1:05 pm
Tools for Family Caregivers: CareMAP and Caring & Coping
Vaughn Edelson, National Parkinson Foundation (Miami, FL)

1:05 – 1:15 pm
Break

1:15 – 2:10 pm
Breakout 2 (to be announced soon)

2:10 – 2:20 pm
Break

2:20 – 2:30 pm
Coping Strategy: Mindfulness
Paula Wiener, MSW, LCSW, National Parkinson Foundation (Chicago, IL)

2:30 – 3:30 pm
Embracing the Challenge: A Panel Discussion
Moderator: Tony Borcich, LCSW, Parkinson’s Resources of Oregon (Portland, OR)
Julie Beck, spouse of person with young-onset Parkinson’s (Chicago, IL)
Rick Bentley, adult child of person with Parkinson’s (San Francisco, CA)
Pat Smith, spouse of person with Parkinson’s (Canandaigua, NY)

6% of Mayo MSA cases also had CTE

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6% of Mayo MSA cases also had CTE

There was an interesting paper on MSA brain research published this week that a lot of BSN families played a role in.

Researchers examined 139 MSA brains donated to Mayo Jacksonville. They were looking for evidence of CTE, chronic traumatic encephalopathy. That’s the neurodegenerative disorder developed by football players, soccer players, and other participants in contact sports. They found 8 cases (6%) had CTE pathology. All of the 8 cases were men, and 4 had a documented history of playing contact sports. The median age at death in MSA with CTE was younger than in MSA without CTE. The abstract is below.

About 25% of these 139 MSA brains were donated to the Mayo Clinic as a result of the generosity of MSA families who were assisted by Brain Support Network in the brain donation process!

Robin

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www.ncbi.nlm.nih.gov/pubmed/27543120

J Neuropathol Exp Neurol. 2016 Aug 18. [Epub ahead of print] Chronic Traumatic Encephalopathy Pathology in Multiple System Atrophy.
Koga S, Dickson DW, Bieniek KF.

Abstract
Chronic traumatic encephalopathy (CTE) is a progressive neurodegenerative disorder associated with repetitive traumatic brain injury. Multiple system atrophy (MSA) is a Parkinsonian disorder that can result in repetitive falls with associated head trauma. We hypothesized that patients with neurodegenerative disorders like MSA could develop CTE pathology. Therefore, we assessed CTE pathology in 139 MSA cases in our brain bank. Sections from convexity cerebral cortices were screened by immunohistochemistry with anti-phospho-tau antibody. For cases with suggestive CTE pathology, further sections of basal forebrain and hippocampus were immunostained. Consensus criteria were used to make the diagnosis of CTE and aging-related tau astrogliopathy (ARTAG) was differentiated from CTE pathology. Pertinent clinical information was derived from the available records and online searches. Of the 139 MSA cases, 8 (6%) had CTE pathology and 10 (8%) had ARTAG pathology. All 8 cases with CTE were male and 4 of them had a documented history of contact sports. The median age at death in MSA with CTE was younger than in MSA without CTE or MSA with ARTAG (60, 67, and 74 years, respectively; p = 0.002). Even without a known history of contact sports or head trauma, a small subset of cases with MSA had CTE pathology.

PubMed ID#: 27543120

StemGenex in SoCal and stem cell marketing hype

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StemGenex in SoCal and stem cell marketing hype

This interesting article from today’s Los Angeles Times is about the La Jolla-based company StemGenex. I do know of some people in the MSA community and PD community who have contacted StemGenex about their stem cell “treatment.”

StemGenex’s director of media and community relations told the article’s author that the company’s “principal purpose is helping people with unmet clinical needs achieve optimum health and better quality of life,” and that it has “anecdotal feedback … from our patients that their symptoms have dramatically improved and their quality of life has substantially increased.”

The author, Michael Hiltzik, points out:

“But on its website, the group disavows any claim that ‘treatment using autologous stem cells [that is, cells drawn from the patient’s own body] are a cure for any condition, disease, or injury. ‘ It acknowledges that ‘stem cell therapy is not FDA approved and is not a cure for any medical condition,’ and that U.S. health insurance companies won’t cover the procedure, which costs $14,900.”

Mr. Holtzik has lots of negative things to say about StemGenex and its website.  He followed up with the company about its claim of accreditation as an outpatient surgical facility.  After his questions, the company removed that accreditation from its website.

The author reports that two researchers — Leigh Turner, University of Minnesota bioethicist, and Paul Knoepfler, UC Davis stem cell scientist — found 570 clinics involved in “stem cell tourism,” with “hot spots” in Southern California, Phoenix, New York, San Antonio, and Austin.  Researchers are very alarmed about what’s going on in clinics around the US.

Check out the full article here:

www.latimes.com/business/hiltzik/la-fi-hiltzik-stem-cell-scam-20160821-snap-story.html

BUSINESS
These new stem cell treatments are expensive — and unproven
LA Times
Michael Hiltzik, columnist
August 19, 2016

Robin

Differences between PD and atypical parkinsonian disorders

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This post may be of interest to those people looking for a short overview of the four atypical parkinsonism disorders – PSP, CBD, MSA, and DLB – or who want to know the key differences in typical Parkinson’s Disease and the atypicals as a group.

An overview of diagnosing atypical parkinsonian disorders was published in the August 2016 issue of Continuum, a journal for neurologists.

The article includes a list of symptoms (“red flags”) that are “predictive of atypical parkinsonism”:

Rapid disease progression
Early gait instability, falls
Absence or paucity of tremor
Irregular jerky tremor, myoclonus
Poor/absent response to levodopa

The article also includes a list of symptoms that should lead a neurologist to think about specific atypical parkinsonism disorders such as:

PSP:  abnormal eye movements; early, prominent dementia

CBS:  apraxia; alien limb; myoclonus; early, prominent dementia

MSA:  pyramidal tract/cerebellar signs; dysautonomia; severe dysarthria; dysphonia; stridor

DLB:  early, prominent dementia

I’m very surprised hallucinations, delusions, and fluctuating cognition were not listed as red flags for DLB!

The abstract is available at no charge. Amazingly, the full article seems to be available at no charge; grab it while you can! See:

Diagnostic Approach to Atypical Parkinsonian Syndromes.
Nikolaus R. McFarland
Continuum. 2016 Aug;22(4 Movement Disorders):1117-42.
PubMed ID#: 27495201

Link to Abstract

Link to Full article

Happy reading!

Robin

 

MSA Overview in Continuum, August 2016

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An overview of diagnosing atypical parkinsonian disorders, including multiple system atrophy (MSA), was published in the August 2016 issue of Continuum, a journal for neurologists.

The article describes MSA as follows:

MSA is characterized by variable presentations of parkinsonism, cerebellar and pyramidal signs, and autonomic dysfunction. … Two clinical phenotypes are generally distinguished by predominant parkinsonism (MSA–parkinsonian type [MSA-P]) or predominant cerebellar ataxia (MSA–cerebellar type [MSA-C]). Median age of onset for MSA is 58 years of age, which is younger than that of PSP and CBD. No MSA cases have been identified younger than age 30, whereas for PSP the cutoff age is 50 years. Disease progression is faster than in PD and mean survival is approximately 6 to 9 years, consistent with more widespread neurodegeneration.

There’s nothing new in the article (except the very brief mentions of dementia in MSA – a bit more on that below) but it provides a good summary of current knowledge about MSA.  The article discusses:

* MSA-P symptoms, including parkinsonism, tremor (distal, myoclonic), rigidity, dystonia, anterocollis, early falls, dysarthria, dysphonia, autonomic failure (69%), dyskinesia (orofacial common).  A case study of someone with MSA-P is provided.

* MSA-C symptoms, including limb ataxia, gait ataxia, early falls, dysarthria (ataxic), dysphagia, gaze impairment, emotionality

* MSA pathology

* MSA diagnostics

* MSA treatments

Some excerpts are copied below.

The author lists “progressive dementia” as a possible symptom of MSA-C.  And, the author points to an article from 2010 that estimates “dementia in 14% to 16% of patients with MSA.”  I’ll have to read that 2010 article to see if there’s autopsy confirmation and if they really mean “dementia” or “cognitive impairment.”ed below.

The abstract is available at no charge. Amazingly, the full article seems to be available at no charge; grab it while you can! See:

Diagnostic Approach to Atypical Parkinsonian Syndromes.
Nikolaus R. McFarland
Continuum. 2016 Aug;22(4 Movement Disorders):1117-42.
PubMed ID#: 27495201

Link to Abstract

Link to Full article

Happy reading!

Robin

Excerpts from
Diagnostic Approach to Atypical Parkinsonian Syndromes.
Nikolaus R. McFarland
Continuum. 2016 Aug;22(4 Movement Disorders):1117-42.

KEY POINTS

* Multiple system atrophy–parkinsonian type may be differentiated from Parkinson disease by its more symmetrical appearance, atypical tremor, dystonia (antecollis), early dysarthria/dysphonia, gait and postural instability, dysautonomia, and rapid progression.

* Multiple system atrophy–cerebellar type is one of the most common causes of sporadic, adult-onset ataxia and is distinguished by parkinsonism, dysautonomia, and rapid progression.

* Pharmacologic treatment of orthostatic hypotension may include enhancing blood volume with fludrocortisone or desmopressin or adding drugs that increase vascular resistance such as midodrine, droxidopa, or pyridostigmine.