Category Archives: PSP

Fox Trial Finder Expanding to Include Atypical Parkinsonism

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Fox Trial Finder Expanding to Include Atypical Parkinsonism

My name is Phil Myers and I have Parkinson’s Disease.  I have been involved with Brain Support Network (BSN) since my wife was diagnosed with progressive supranuclear palsy (PSP), one of the atypical Parkinsonism diseases.  Her story is available on BSN’s website at:

www.brainsupportnetwork.org/brain-donation/case-studies/

BSN has partnered with the Michael J. Fox Foundation to help spread the news regarding their new effort to improve research into four atypical parkinsonism disorders — corticobasal degeneration, progressive supranuclear palsy, multiple system atrophy, and Lewy body dementia/dementia with Lewy bodies.

An ongoing issue is recruiting patients to participate in clinical trials and studies.  Fox Trial Finder is a tool that has provided information on trials and studies of research in Parkinson’s Disease.  This week, Fox Trial Finder has been expanded to include the atypical parkinsonism diseases.  Those with CBD, PSP, MSA, or LBD/DLB can now register with FTF here:

Fox Trial Finder

As a Board member of Brain Support Network, I encourage you to register and help researchers solve the mysteries of your disease of interest.

Copied below is the announcement about this from the Michael J. Fox Foundation.

Phil
[email protected]

Announcement from
Michael J. Fox Foundation
July 25, 2016

Fox Trial Finder Expands to Include Atypical Parkinsonism

The Michael J. Fox Foundation’s online trial matching tool, Fox Trial Finder, is expanding to include studies and registration options for atypical parkinsonism, conditions that share some symptoms and biology with Parkinson’s disease.

Speeding research into atypical parkinsonism will advance understanding and therapies for these conditions and, perhaps, for Parkinson’s as well.

Register today for Fox Trial Finder to be matched with studies. Already registered?  Make sure your profile is up to date.

Learn more about atypical parkinsonism in our next Third Thursdays Webinar on August 18 — michaeljfox.org/webinars

 

“What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time

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“What Are the Other Parkinsonisms?” Webinar, Aug 18, 9am CA time

The Michael J. Fox Foundation has a terrific monthly — Third Thursdays — webinar series. Finally they are getting around to the atypical parkinsonism disorders next month, Thursday, August 18th at 9am California time. (….though it seems that there will still be a Parkinson’s Disease angle on the webinar.)

If you are not able to participate in the one-hour webinar live, I encourage you to register for it so that you’ll receive notice when the recording is available online. Usually the recording is available within a week of the webinar.

Copied below are the details from the MJFF website.

Robin

Michael J. Fox Foundation
Third-Thursday Webinar
Thursday, August 18 @ 12 p.m. ET / 9 a.m. PT

In this webinar we’ll discuss atypical parkinsonisms of corticobasal degeneration, multiple system atrophy, Lewy body dementia and progressive supranuclear palsy. What are the similarities and differences? Could treatments for one condition help those with another, including Parkinson’s disease?

Click here and then on the orange REGISTER NOW button:

www.michaeljfox.org/page.html?hot-topics-webinar-series

Is Parkinson’s and parkinsonism on the increase?

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An interesting study was published in JAMA a couple of weeks ago. The authors, from Mayo Rochester, state: “Our study suggests that the incidence of parkinsonism and PD [Parkinson’s Disease] may have increased between 1976 and 2005, particularly in men 70 years and older. These trends may be associated with the dramatic changes in smoking behavior that took place in the second half of the 20th century or with other lifestyle or environmental changes. However, the trends could be spurious and need to be confirmed in other populations.”

If the increase in parkinsonism and PD were due to improved diagnosis, then we would likely see this effect in both men and women. But the researchers found an increased incidence in men especially.

There is research (albeit controversial), both in PD and in PSP (progressive supranuclear palsy), that smoking may suppress symptoms. Indeed, my father’s PSP symptoms began *after* he quit smoking. Another local support group member had the same experience. The rate of smoking has decreased more rapidly in men than women in the US.

Alzforum compares the rise of incidence in parkinsonism and PD with the opposite findings for dementia: “This finding is in stark contrast to a measurable decrease in Alzheimer’s disease in Europe and the United States, which researchers attribute to healthier lifestyles of late.”

Copied below is the link to the short Alzforum summary of the JAMA research paper and related papers, and the full Alzforum summary. And copied below is the link to the JAMA paper abstract.

See: www.alzforum.org/news/research-news/rising-tide-parkinsons

A Rising Tide of Parkinson’s?
Alzforum
July, 8 2016

Also see: www.ncbi.nlm.nih.gov/pubmed/27323276

JAMA Neurology. 2016 Jun 20.
Time Trends in the Incidence of Parkinson Disease
Savica R, Grossardt BR, Bower JH, Ahlskog JE, Rocca WA.
Mayo Clinic, Rochester, Minnesota.

Robin

Scientific American article on PSP research as a “backdoor” to Alzheimer’s

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Very longtime group member Sam M. emailed this to me yesterday. It’s a nice article in yesterday’s “Scientific American” about how PSP is providing a backdoor to Alzheimer’s research.

Both PSP and Alzheimer’s are tauopathies but PSP is a “pure” tauopathy. So, if we can solve the problem of tau in PSP, we can solve the tau problem in Alzheimer’s. Another reason PSP is of interest is because PSP’s genetic link to tau is stronger than Alzheimer’s. Further, somewhat sadly, the decline in PSP is faster than the decline in Alzheimer’s, so researchers can study a drug more quickly in PSP.

Note that researchers are interested in enrolling Richardson’s Syndrome patients. This is the type of PSP where the tau load is the heaviest and brain atrophy is the fastest.

IMPORTANT – we know about PSP’s genetic link to tau and all about Richardson’s Syndrome because of brain donation. Indeed, Sam M.’s partner donated her brain as have many, many of our group members.

These ideas have been around now for several years but it’s nice to see coverage of it in a great magazine like “Scientific American.”

Scientific American: Neurological Health
“Obscure Disease May Offer Backdoor to New Treatments for Alzheimer’s and Other Killers”
By Esther Landhuis on June 8, 2016
Progressive supranuclear palsy has become a test bed for therapies aimed at the tau protein thought to be behind many devastating neurodegenerative disorders

www.scientificamerican.com/article/obscure-disease-may-offer-backdoor-to-new-treatments-for-alzheimer-s-and-other-killers/

Robin

Short excerpt on PSP (from frontotemporal dementias document)

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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.

Robin

PS:

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