Category Archives: Parkinson’s

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

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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

Register:
event.netbriefings.com/event/pdeb/Live/therapy/register.html

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.

 

Carbidopa/Levodopa Recall

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This post is only of interest to the small number in our support group who take carbidopa/levodopa (better known by the brand name Sinemet).

Last Wednesday, 8-27-14, Teva Pharmaceutical Industries issued a voluntary recall in the US of one lot of its carbidopa/levodopa 25mg/100mg medication because testing showed that the medication is “super potent.”

The website NewsInferno.com says:  “According to the U.S. Food and Drug Administration (FDA), the lot number involved is 29C220 and the expiry date is 11/15.”

If you have this medication, return it to the pharmacy.

Robin

Partners in Parkinson’s event, Sat Aug 9, 8am to 3:30pm, San Mateo

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This “Partners in Parkinson’s” event on Saturday, August 9th, in San Mateo may be of limited interest to those in our atypical parkinsonism community since the focus is Parkinson’s Disease (PD).  There is no charge to attend but advance registration is requested.

Important note: Last week when I registered, the confirmation webpage showed the wrong date.  But the confirmation email had the correct date.  Don’t be confused!

Brain Support Network will have a table at the all-day (8am to 3pm) resource fair.  You can stop by our table and see all of our new print materials on the top resources for LBD, PSP, MSA, and CBD.  Other community groups and movement disorder centers will have tables to share information and materials.

There will be panel sessions and breakout discussions from 9am to
3:30pm.  Breakfast and lunch will be provided. (No idea about the menu and if it will be “friendly” to those with swallowing problems.)

Speakers include Kathleen Poston, MD, movement disorder specialist at Stanford, Brian Fiske, PhD, vice president of research programs at the Michael J. Fox Foundation, and the Bay Area’s Dave Iverson, veteran journalist and patient living with Parkinson’s.

Registration seems to be online only.  See:
tfaforms.com/337817

Check out this webpage for other event dates in other cities:
partnersinparkinsons.org/attend-an-event

Copied below are the details about the August 9th San Mateo event.

See you there!

Robin

—————————————————————

Partners in Parkinson’s Bay Area

WHO:  People living with Parkinson’s disease and their families

WHERE:  San Mateo Event Center, 1346 Saratoga Drive, San Mateo, CA 94403

WHEN:  Saturday, August 9, 2014, 8:00 a.m. – 3:30 p.m.

EVENT SCHEDULE

Note: A resource fair will be open from 8 a.m. to 3 p.m. for you to
access between and during sessions.

8:00 – 9:00 a.m.    Registration and breakfast
9:00 – 9:15 a.m.    Welcome and Introduction
9:15 – 9:45 a.m.    The Many Faces of Parkinson’s Disease
9:45 – 10:45 a.m.  Seeing a Movement Disorder Specialist: What to
Know, Ask and Expect
10:45 – 11:00 a.m. Morning break
11:00 – 11:45 a.m. Parkinson’s Research: The Road Ahead
11:45 – 12:15 p.m. Moderated Q&A on Morning Sessions
12:15 – 1:15 p.m.   Lunch
1:15 – 2:00 p.m.    Breakout Sessions
2:00 – 2:15 p.m.    Afternoon break
2:15 – 3:00 p.m.    Breakout Sessions
3:00 – 3:30 p.m.    Closing Session: What’s Next?

BREAKOUT SESSIONS
Living Well with Parkinson’s: A Holistic Approach, Led by National
Presenting Partner The Davis Phinney Foundation

Building Connections with Family, Friends and Community

I’m Still Wondering About…
Partners in Parkkinson’s is a collaboration between The Michael J Fox
Foundation for Parkinson’s Research and AbbVie Inc., a pharmaceutical company.

Medicare Policy Change – No Improvement Requirement

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This recent New York Times post from the New Old Age is about the fact that Medicare has changed its policy manual to eliminate the need for improvement to receive physical therapy, speech therapy, etc.  Here’s an excerpt:

In January of 2014, Medicare officials updated the agency’s policy manual — the rule book for everything Medicare does — to erase any notion that improvement is necessary to receive coverage for skilled care. That means Medicare now will pay for physical therapy, nursing care and other services for beneficiaries with chronic diseases like multiple sclerosis, Parkinson’s or Alzheimer’s disease in order to maintain their condition and prevent deterioration.

This is a very important change.  We’ll see how it plays out within Medicare and whether other insurance companies go along with this policy change.

Here’s a link to the full article:

newoldage.blogs.nytimes.com/2014/03/25/a-quiet-sea-change-in-medicare/

The New Old Age: Caring and Coping
The New York Times
A Quiet ‘Sea Change’ in Medicare
By Susan Jaffe 
March 25, 2014 5:00 AM

Robin

FDA Approves Droxidopa (to treat OH)

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Orthostatic hypotension (OH) is a sudden drop in blood pressure when sitting up or when standing up.  Many (most?) with MSA have this symptom.  And about 40% of those with LBD have this symptom.  It can lead to fainting or falling.

Yesterday, the FDA approved droxidopa (Northera is the brand name) for use in treating orthostatic hypotension.  As we’ve read on the MSA-related Yahoo!Groups, a minority of people could tolerate this medication but for that group the drug was very helpful.

The Michael J. Fox Foundation cautions that users of droxidopa should sleep with their head and upper body elevated as the medication can increase one’s blood pressure when lying down.

Robin