“Kerry Simon’s Intensive Rehab Program”

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:


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:


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.


Kerry Simon Article with Lots About MSA

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:


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.



FDA Approves Droxidopa (to treat OH)

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.



“Navigating Negativity” Webinar Notes and Other Resources from Janet Edmunson

Though the introductory part of this post uses the word “caregiver” a lot, the rest of this post applies to us all, whether we are caregivers, care recipients, or not actively giving or receiving care.

Many years ago, Janet Edmunson visited the Bay Area.  Our local support group organized several events for her to speak about her book “Finding Meaning with Charles.”  The book is centered around “caregiver affirmations.”  Her husband Charles was diagnosed during life with PSP, and with CBD upon brain donation.  These “affirmations” helped her focus on the positive in her caregiving journey.  We have many copies of this book in our local support group’s lending library; many of us recommend it.

On Janet’s website, affirmyourself.com, you can sign up for a “weekly affirmation” email.  Examples:  “Hold on to your passions, because they are the essence of who you are.”  “Surround yourself with positive people and messages.”

Over the last couple of years, she’s been conducting webinars on some of the topics that interest her the most.  In 2013, she presented a five part series called “Affirm Yourself for Caregiving Challenges.”

Today, Janet organized a webinar on “Navigating Negativity,” where psychologist Amy Wood spoke about dealing with negative people in our lives.  I’ve copied my notes from the webinar below.  I think it’s worth reading Dr. Wood’s “four steps to navigating negativity” as well as her “four examples of solution-focused questions” to ask yourself or a negative person.  The webinar was recorded, and the recording will be available on Janet’s website soon.



“Navigating Negativity”
A webinar  (being recorded)
Guest presenter – Amy Wood, Psy.D. ([email protected])
Organizer – Janet Edmunson, affirmyourself.com
Thursday, February 6, 2014

Decide that “no negative thoughts are allowed.”

Trying to be happy takes a lot of work.

Our goal is healthy, realistic optimism.  An optimist is between “positivity” (“it will happen”) and “negativity” (“it will never happen”).  Realistic optimism = “it could happen.”

True optimist looks at both extremes and says “there are downsides and upsides.”  “I’m going to find a solution.”  “I’m going to make the best of this.”

Optimism is a solutions-focused approach.

How can you convert negative people?

Four steps to navigating negativity:  (cute graphic)

1- See the full picture.  Don’t immediately make an assumption like “this is all great” or “this is all terrible.”  Try to listen to a negativist’s point of view by asking “why do you think this will never work?”  Don’t just dismiss the negativist.

2- Find value in cynicism.  Negativists became more negative over time because no one is listening to them.  Try to find some wisdom in what the negativist says.

3- Offer a chair.

4- Switch gears when enough is enough.

Don’t ask a negative person general questions, like “Tell me what’s wrong.”  You must ask specific questions.

Extract positivity with solution-focused questions!  This is the key in turning around negativity.  Four examples of solution-focused questions:  (to ask others or yourself)

1- “What’s the most positive thing you can see in this situation?”

Lots of times caregivers get stuck in what’s been lost.  It’s important to redirect to positivity.  Example:  “One positive thing is that we get to spend lots more time together.”

2- “In a perfect world, if you had unlimited resources and power, what would you do to solve this problem?”

3- “What personal skill can you apply to make things better?”

4- “What do you hope to accomplish with this conversation?”  “What’s the point you are trying to get across?”  (Maybe there isn’t a point.  Can the negativist see that the conversation is a waste of time?)

“People inspire you, or they drain you — pick them wisely”  (Hans F. Hansen)  Consider ending friendship or changing jobs in order to eliminate negativists from your life.

You can’t choose your family/co-workers/neighbors/community members, but you can ignore their phone calls!

“Become a possibilitarian.  No matter how dark things seem to be or actually are, raise your sights and see possibilities — always see them, for they are always there.”  (Norman Vincent Peale)


Q:  Can the toxic person be a caregiver?
A by Amy:  Yes, this is hard if the care recipient is relying on the toxic person to give care.  Principles are the same.  Set limits.

Q:  Mother only vents with me.
A:  Re-direct your mother.  Set limits. “I love to talk with you about all kinds of things, but I’m not here to only listen to you vent.”

Q:  My depressed spouse drains me.
A:  Set limits.  “I’m here for you.  It seems we talk about the same things, and you are still depressed.  Can I get you professional help?  Can both of us go to couples therapy?  I am a spouse, not a therapist.”

A by Janet:  Charles and I did couples counseling and found it extremely helpful.