September 2014 - Page 3 of 3 - Brain Support Network

The Parkinson’s Disease Foundation (PDF) is having another of its every-other-month one-hour webinars this coming Tuesday at 10am California time. The title is: Occupational Therapy and Parkinson’s: Tips for Healthy Living. But this webinar is about lots more than what we normally think of with the term “occupational therapy (OT).”

If you don’t have web access at that time, you can listen in to the audio portion of the event. Also note that the webinar recording is generally available one week after the live webinar. If you register for the webinar, you will automatically receive an email alerting you to the webinar recording’s availability, whether you attended or not.

In general, I highly recommend these PDF webinars as they are typically great presentations and the speakers do a good job with audience questions at the end. Even though they are focused on Parkinson’s Disease, they are still useful to those in our support group because they are often focused on symptoms that our group members also experience.

After taking a look at the two speakers’ slides, I’d really encourage you to participate in this Tuesday’s webinar. The speakers start from research that shows that those with neurological diseases and their care partners have “highly compromised work and leisure lives” due to the disease. In particular, those with Parkinson’s “had lower sense of feeling of control and consistency in their lives, fewer active coping strategies and lower well-being compared to people with chronic non-neurological disease.”

The speakers focus on resilience. One of the speakers has published research showing that:

“People with Parkinson’s who learn strategies for how to maintain participation in valued life activities have a higher quality of life than those who do not learn these strategies.”

This reminds me of Janet Edmunson’s book titled “Finding Meaning with Charles.” There’s a story about how she and her husband Charles (diagnosed with PSP during life and CBD upon brain donation) kept up the ritual of going out for frozen yogurt every week — despite the challenge and mess — because it had been an important part of their weekly routine.

This webinar will hopefully impart some self-management strategies for maintaining quality of life. If you participate, let me know what helpful techniques you picked up that should be shared with others in our group.

The details are below.

Robin

Occupational Therapy and Parkinson’s: Tips for Healthy Living

PD ExpertBriefing
Webinar hosted by Parkinson’s Disease Foundation

Tuesday, September 9, 2014
1:00 PM – 2:00 PM ET
(The webinars are usually on the first Tuesday but are moved to the second Tuesday if the first Tuesday is close to a holiday.)

Speakers:
* Sue Berger, Ph.D., O.T.R/L., B.C.G., F.A.O.T.A., of Boston University College of Health and Rehabilitation Sciences: Sargent College
* Linda Tickle-Degnen, Ph.D., O.T.R/L., F.A.O.T.A., of Tufts University

Learning Objectives
* Understand how occupational therapy can help people with Parkinson’s disease and their families.
* Learn practical strategies for increasing satisfaction with daily activities such as self-care, leisure and work.
* Find tips for preparing for changes in life activities and roles on the road ahead after a diagnosis.

General info about this webinar:
http://www.pdf.org/en/parkinson_briefing_occupationaltherapy

Download slides:
www.pdf.org/pdf/parkinson_briefing_occupationaltherapy_090414.pdf

If you are only listening in by phone and not viewing the slides live, you can call in to this number to hear the audio:
(888) 272-8710
passcode 6323567#

Technical questions about how a webinar works? Contact NetBriefings, www.netbriefings.com/support/, or at (651) 225-1532.

As you may know, Alzheimer’s is a disorder involving two proteins — tau and amyloid. Tau gets misfolded into tangles in Alzheimer’s. These tau tangles are also part of PSP and CBD. There has been a push over the last few years — largely led by Adam Boxer, MD, at UCSF (well, that’s my view of things) — that Alzheimer’s drugs targeting tau are best studied in PSP. More precisely, they are best studied in the Richardson’s Syndrome form of PSP (PSP-RS).

There are several reasons for this. One is that atrophy occurs in the PSP-RS brain at a faster rate than in an AD brain. Another is that PSP is a disorder of tau only so it’s ideal to study a tau-busting drug in PSP. Another the diagnostic accuracy for PSP-RS is quite high. Also, it is easier to get a PSP drug trial approved by the FDA since PSP is considered a rare disorder.

The Alzheimer’s Association held at International Conference in mid-July in Denmark. Alzforum, a website for Alzheimer’s researchers, posted a write-up in mid-August of the tau-related research reported at the conference:

alzforum.org/news/conference-coverage/therapies-take-aim-tau

The write-up summarizes the research this way:

“Potential therapies included two active vaccines, an antibody, an inhibitor of the enzyme that removes sugar molecules from tau, and an anti-aggregating compound. Most scientists are planning, or have already started, tests in humans.”

Other than those sentences and a few other general sentences, the tau therapies write-up is pretty hard to understand. Of course I tried harder to understand when “PSP” was mentioned.

One research group plans for human studies in late 2015 in PSP with a compound that it hopes will disrupt the aggregation of tau.

Remember that there is currently a safety study going on at UCSF in both PSP and CBS with intravenous infusions of an experimental drug aimed at tau. There are four infusions over a nine week period. See:

clinicaltrials.gov/ct2/show/NCT02133846

Hopefully one of these efforts will pan out for PSP, CBD, and AD!

Robin

Monthly Archives: September 2014

“Tips for Healthy Living” Webinar (resilience, quality of life, occupational therapy)

Tau Therapies in the Pipeline (one to be studied in PSP in late 2015)