Category Archives: MSA

PSP, LBD, MSA, CBD Caregiver Symposium – Sat 7-12, Foster City – Save the Date!

Date
Posted by

SAVE THE DATE!

PD AND ATYPICAL PARKINSONISM (PSP, LBD, MSA, CBD) CAREGIVER SYMPOSIUM

SATURDAY, JULY 12  –  ALL DAY  –  FOSTER CITY

The Stanford PD Caregiver Support Program is pleased to present an all-day Parkinson’s Disease and atypical parkinsonism caregiver symposium, to be held at the Crowne Plaza Foster City on Saturday July 12, from 9am to 4pm.  This hotel is right off highways 92 and 101.

Our 2012 caregiver symposium got great reviews and we aim for the same quality level or higher in 2014.  Nearly all of the 2014 symposium speakers will be different from 2012.

Symposium speakers will address one of these key topics:
* dealing with the emotional and psychological aspects of being a caregiver or care partner, and
* the practical aspects of dealing with a loved one’s symptoms.

TWO GREAT SPEAKERS LINED UP

One keynote speaker is Kathleen Poston, MD, MS, movement disorder specialist at Stanford, and a favorite guest speaker at many PD support group meetings.  She will speak on the topic of what caregivers can do to help address cognitive, memory, and mood symptoms.

Another keynote speaker is Rosalind Chuang, MD, movement disorder specialist at Stanford, and another favorite guest speaker at support group meetings.  She will speak on the topic of what caregivers can do to help address motor and autonomic symptoms.

Both speakers are very familiar with atypical parkinsonism disorders.  Many in our support group see these MDs for regular care or have seen them for a second opinion.

Breakout sessions are on topics including care options, coping with dementia, financial issues in elder care, etc. Presenters come from Family Caregiver Alliance and other great Northern California organizations.  Other general session and break-out session speakers are being finalized now.

WHAT IS INCLUDED

There will be a small registration fee (probably $35 for early-bird registrants).  Once we finalize the agenda, we will launch a registration webpage.  Attendance will be limited to the first 150 registrants.  The symposium will run from 9am to 4pm.  Registration and continental breakfast (with fresh fruit) will start at 8am.  A delicious hot lunch will be provided (no more sandwiches!).

WHO IS INVITED

This event is for family or friends who care for someone with Parkinson’s Disease, Lewy Body Dementia, Progressive Supranuclear Palsy, Corticobasal Degeneration, Multiple System Atrophy, or atypical parkinsonism (also called Parkinson’s Plus).

This includes those who:
* live with someone with PD or parkinsonism, or
* consider themselves “care partners,” or
* have family members or friends with PD or parkinsonism, or
* give hands-on care, or
* manage someone’s care, or
* are concerned about a friend or family member, or
* provide psychological or practical support to someone with PD or parkinsonism.

Both current and former caregivers are welcome.  A small number of spaces will be allotted to professional caregivers.  We hope to offer CEUs.

One of the benefits of caregiver-only events is that caregivers can speak openly about the challenges associated with their role.  This event is NOT open to anyone WITH one of those diagnoses.  The exception is if someone with one of those diagnoses is/was also a caregiver to a person with one of those diagnoses.

If you have a neurological diagnosis and are reading this email, please pass this info along to the family members or friends who care about you!  They need support too.

Given privacy concerns, we do not plan on videotaping this event.

IF YOU ARE INTERESTED…

In attending:
If you are receiving this email, you are on the Brain Support Network email list.  All on this list will be notified when registration is open.  Stay tuned…

In volunteering:
As with our 2012 symposium, Brain Support Network may provide most or all of the volunteers.  Please email Steven Russell ([email protected]) if you’d like to volunteer at this event.  (Steven is also BSN’s treasurer.)

COMING SOON…

More info will be available soon.  When registration information is available, this webpage will be updated:
parkinsons.stanford.edu/cgr_events.html

In the meantime, please SAVE THE DATE — Saturday 7-12-14.

Robin

 

Medicare Policy Change – No Improvement Requirement

Date
Posted by

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

“Kerry Simon’s Intensive Rehab Program”

Date
Posted by

One of the members of our local group pointed out that a recent article about Kerry Simon mentioned the “intense mental and physical exercise” he receives at the Cleveland Clinic in Las Vegas.   I found this webpage that describes some of the options, in general terms, for that exercise:

my.clevelandclinic.org/neurological_institute/lou-ruvo-brain-health/brain-health-disease-management/therapy-services.aspx

There’s a tab for “Physical & Occupational Therapy” and a tab for “Cognitive Rehabilitation.”  On the PT/OT tab, it mentions:  “Computerized brain training provides fun and engaging brain exercises that can help improve memory, focus and concentration.”  Perhaps this is something like Luminosity.  And on the cognitive tab, it mentions:  “Another component of the program is aerobic exercise training with an emphasis on walking programs.”  So obviously there’s a lot of overlap between the physical and mental exercises.

I mentioned to local support group member Lily Shih our interest in wanting to know more about the “intense mental and physical exercise” that Kerry Simon receives.  She forwarded me this article in today’s Las Vegas Sun newspaper.  It describes Kerry using a partial body weight-supported treadmill, Kerry playing mahjong while walking or riding an exercise bike, and the physical therapist stretching out Kerry’s limbs.

Here are two interesting excerpts from the article:

Simon says he feels fine mentally, but it is difficult for him to speak fluidly. On the day of this therapy session, he has been asked to record public service announcements to raise money for MSA treatment and awareness. He muscled his way through those segments and is aware that he has unwittingly become a powerful spokesman for the fight against MSA.  “I don’t really feel comfortable with talking so much, but what I do feel comfortable with is bringing attention to MSA and finding a cure for MSA,” he says. “And it’s not just MSA, but all brain diseases in general, because they are all similar. If you look up anything about them, you’ll see there are similarities between all of them.”

Nash [the physical therapist] has worked countless hours with Simon. The two are well aware of the grip MSA has on a patient.  “He knows the long-term prognosis, and we are working primarily on controlling the symptoms and minimizing the falls,” says Nash…  “We’ve gone from walking without any device to walking regularly with a cane to several different types of walkers until he was fitted for a power wheelchair. … Basically, we are trying to maximize his independence. … All of the patients I work with have a progressive disease. So you are working for one day, one moment, of strength and hope.”

See the full article here:

lasvegassun.com/news/2014/feb/23/kerry-simons-intensive-rehab-program-walk-his-life/

Kerry Simon’s intensive rehab program is the walk of his life
By John Katsilometes
Las Vegas Sun
Sunday, Feb. 23, 2014 | 2 a.m.

Robin

Kerry Simon Article with Lots About MSA

Date
Posted by

Several days ago, group member Lily Shih forwarded me this terrific (albeit long) article on celebrity chef Kerry Simon.  There’s quite a bit about MSA in the article.  See:

vegasseven.com/2014/02/12/a-chef-his-brigade-and-the-indomitable-next-course-kerry-simon/

A Chef, His Brigade and the Indomitable Next Course
For four decades, Kerry Simon has been one of the culinary worlds most dashingand most belovedkitchen warriors. Now a rare disease has him fighting for his life.
Vegas Seven
By Lonn M. Friend
2/12/14, 9:59am

Apparently Kerry Simon is participating in the Mayo Rochester stem cell trial.  I keep hearing about people getting added to the small pilot trial, though I thought it had reached maximum enrollment several months ago.

Robin

 

FDA Approves Droxidopa (to treat OH)

Date
Posted by

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