Parkinson's Dancers Focus on Dance, Not Disease

You’re not going to observe any signs of apathy or depression in these Parkinson's dancers in Colorado Springs and Brooklyn. In fact, even talking about Parkinson’s Disease is forbidden in their dance classes. Their focus is on dance, not disease. Check out the following story:

Controlled Moves

Story from: New Bern Sun Journal - by Brian Newsome - ‎June 27, 2009‎
 
Colorado Springs, Colorado -  Barbara Willis moves with the steady grace you might expect from someone who's taught dance for decades.

Her eyes are closed, and she seems lost in the music.

Her moves are slow and purposeful. She tells the class to take deep breaths and reach upward.

The five students, a hodgepodge of elderly and middle-aged men and women, sit in folding chairs and do exactly as she says.

"It's amazing how, if you have a tremor, it will disappear during this song," Willis, 73, tells them. "These moves are difficult for us, but the music overcomes it."

Two things have brought them together in this mirrored studio in southwest Colorado Springs: Parkinson's disease, and a belief that dancing and movement can help fight it.

For an hour each week, they march, they balance, they dance back and forth to music, all with the idea that they can use movement to combat a disease infamous for taking it away. Some of their caregivers also participate.

"Parkinson's wants to take you and fold you in half and never let you go," Willis says, as the students prepare to stand beside their chairs and lift one leg off the ground.

Every move is a way to slowly unfold again.

Willis' class, held at Spectrum Wellness and Rehabilitation Center, was born out of her personal experience with the disease.

A dancer since her youth, she was diagnosed in 1999.

She consulted a hand surgeon when writing became difficult. He sent her to a neurologist who immediately suspected Parkinson's.

For someone who'd built so much of her life around movement, getting diagnosed with a disease made famous for robbing people of mobility was an especially cruel blow.

She decided to keep dancing, if for no other reason than to preserve her peace of mind. To her surprise, the sessions seemed to help with the symptoms.

She had better balance, better posture and more smoothness in her motion.

Her neurologist, impressed with her progress, urged her to start a class for others.

Unknown to her, a similar program was taking place in Brooklyn, N.Y.

Eight years ago, Olie Westheimer, a dancer married to a prominent Parkinson's researcher, started a Parkinson's support group in Brooklyn to help her husband in his job.

Westheimer was looking for activities to help patients get their minds off the disease when she learned that the world-famous Mark Morris Dance Group had moved to town.

She called to see whether the group would be interested in hosting her support group.

The program has been featured in the national media and has become a model that's led to startup programs worldwide, Westheimer said.

The idea began with a love of dance, but, like Willis, she quickly began to realize its benefit as a kind of therapy.

"The aim of the class is to try to move as beautifully as you can."

"It sounds crazy, but it works," Westheimer said.

Willis' students have said they are able to move a little more freely during and after their classes. But anecdotes don't go far in science, and researchers are in the early stages of exploring how movement and exercise affect the disease.

One such researcher is Margaret Schenkman of the University of Colorado at Denver and Health Sciences Center, who is leading a study to examine a variety of exercises for differences in their effectiveness against Parkinson's.

Previous studies have shown exercise to be beneficial to Parkinson's patients, she said, but whether that's because it somehow helps repair the brain or simply compensates for the disease's deficits is a mystery. Some animal studies have linked exercise with reversing the progression of the disease, but what happens in animals doesn't always prove true in humans.

Her study is at least a year away from completion.

Willis, a retired nurse who worked in neurology, and Westheimer are both well-versed in science, as well as dance, and they say the intersection of performing arts and Parkinson's is not as strange as it might seem at first.

Dance, they say, requires an intense focus on movement, balance, vision and a number of other techniques you might find in a physical therapy session.

"You'd never have a dancer saying, ‘Oh, I use cognitive strategies to dance,'" said Westheimer, but that's exactly what they're doing

"Science is now beginning to understand what dancers know."

Willis said the "mindfulness" of dance and the power of music add something that other exercise does not.

Dr. Brian Grabert, a neurologist at Colorado Springs Health Partners, treats about 200 Parkinson's patients, including Willis and some people involved in her dance program.

In general, he said, those who exercise appear more upbeat and less apathetic, and they tend to report having fewer falls, one of the most serious consequences of the disease as it progresses.

There's one thing that Parkinson's patients find in these classes that they can't find in a doctor's office or rehab session: fun.

Ric Pfarrer, 55, a financial planner and president of a Parkinson's support group, attends Willis' class. He said the chance to come together and have a good time with patients going through the same thing can be as valuable as any physical benefit.

That's a sentiment shared by many others.

Peggy Robinson, 60, said, "I like feeling like I'm not all alone."

At Westheimer's classes, in fact, talk about Parkinson's is not allowed because the emotional escape is one of its strengths. "There's no problem talked about in our class," she said. "We're just dancing."

Considering that 80 percent of Parkinson's sufferers have experienced bouts of depression and report feeling isolated, that's nothing to take lightly.

Grabert said apathy is one of the most common mood disorders associated with the disease, but that's not something he's seen in Willis and other Parkinson's patients who dance.

Choosing the Best DBS Programmer for You

You wouldn’t consider having your Mercedes (or in my case, an old Honda Civic) serviced by an unlicensed auto mechanic. 7481_medical_cartoon  

Source: www.mchumor.com/car_repair1_bframe.html

You wouldn’t purchase a million dollar home and let the weeds grow wild.

The same is true for brain surgery. Finding a competent neurosurgeon to perform your Deep Brain Stimulation (DBS) surgery is only half the battle. It is equally important to have an experienced DBS programmer, one who is willing to work with you to maximize the benefits and minimize the side effects of DBS.

Although there are no “correct” answers to the following questions and no standard minimum training requirements for DBS programmers, the responses will give you some idea of the experience and training of your prospective programmer.

*Checklist for Interviewing DBS Programmers

What is your level of medical training (e.g., neurologist, nurse, physician assistant)?

When and where were you trained in programming?

How long was your DBS training program?

When and where did you begin programming?

Have you had any additional programming training or attended any optional programming seminars?

What scientific literature do you read on DBS and programming?

How many patients have you programmed?

How many patients are you currently programming?

Do you work under a supervising physician? If so, what is your supervisor's name?

With the understanding that every patient is different, on average, how many times do you see a patient before you feel that his or her programming is complete?

What would you do if you encountered an emergency situation while programming?

What kind of patient do you consider having a complicated programming situation? What have you done when programming such a patient?

What kind of follow-up have you provided to your programming patients, e.g., neurological evaluations, wire and battery checks, etc.?

What is the significance of medication adjustments post DBS?

* Some of the above questions were adapted from the book, Life with a Battery-Operated Brain: A Patient’s Guide to Deep Brain Stimulation Surgery for Parkinson’s Disease by Jackie Hunt Christensen at http://www.lifewithbobbook.com/.

Obviously, someone has to be the first patient to be programmed by a new programmer. It’s up to you to decide if that patient will be you.

A Sarcastic Look at Care Health Care Reform

Check out the blog post by Dr. Wes entitled Open Letter to Patients Regarding Health Reform. He has my kind of sarcastic humor.

Parkinson's Disease's Deficits

It's 3:02 in the morning in Colorado. It's NOT a normal waking time for me. However, most of my friends around the world with Parkinson's Disease (PD) have fragmented sleep patterns and wake up in the middle of the night or too early in the morning. But the lack of sleep in PD patients is a story for another time.

There are too many deficits or "lacks of" with PD starting with the "lack of dopamine." In the middle of the night, I am stewing about my "lack of voice and speech." It happened again yesterday: the "lack of communication" when I was talking to a Deep Brain Stimulation (DBS) patient and his family at the hospital. I secretly admired the family member who had the guts to ask me: “How did DBS affect your voice and speech?” I knew he was worried about his father sounding like me after DBS.

My voice and speech have been impacted negatively by PD and worsened by DBS.

The organization DBS-STN conducted an interesting survey, "Speech in individuals with PD with and without DBS" at:  http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf

The survey indicated the following:

“It is common for individuals with PD to experience monotonous and reduced pitch and loudness, variable rate of speech, short rushes of speech, imprecise consonants, and a breathy and harsh voice.”

and

“Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech."

My voice and speech sometimes suffer from further “lacks”:

Lack of strength

Lack of volume

Lack of clarity

Lack of warmth

Lack of vitality

Lack of articulation

Lack of variety

Lack of speed

Lack of being heard

Lack of being understood

which result in my:

Lack of self-esteem

Lack of confidence

Lack of contact with people

Lack of feeling normal

I often feel like One Big Lack!

Occasionally my voice and speech seem almost like my pre-PD self. This is the reason that I refuse to delete my 10-year-old voice mail greeting which demonstrates my potential for a warm and clear voice.

At my last DBS programming session, my neutologist/programmer and speech therapist claimed that my voice sounded "perfectly fine," that the goal is understandable speech, and they can understand me (my interpretation was "So what's the problem?").

When 600 people were chatting in the lobby after the Rockyettes dance performance on June 11, my speech therapist commented that she heard every word I said above the roar of the crowd. It is ironic that I am satisfied with my dance performance but dissatisfied with my speech performance in a situation that requires no speaking.

I don’t know if the professionals are accustomed to such poor speech and voice in their PD patients, that my speech and voice sounds “perfectly fine” to them. But the medical folks are not there to witness the frustrated phone calls or the anger in the faces of the audiences when they can’t hear or understand what I’m saying.

It is similar to the experience that most of us have had when taking our car in for repair only to discover that our car works “perfectly fine” when the car mechanic is present.

During the past years, I’ve tried the following measures to improve my speech and voice. You'll notice that I'm no slacker. 

Thyroplasty

  • Before I was diagnosed with PD thirteen years ago, I went to an ear-nose-and throat physician because of my “lack of voice volume.” During the evaluation process, he discovered that my vocal cords didn't come together when I spoke. The only population he had seen this was in stroke patients. It was obvious that I did not have a stroke, but he never considered the possibility of PD. He suggested having a surgical procedure called a thyroplasty to correct vocal cord weakness. Patients with vocal cord weakness have a weak, breathy and hoarse quality to their voice and speaking requires considerable effort.

Traditional speech therapy

Lee Silverman Voice Treatment (LSVT) and post LSVT exercises including “Think Loud” at: http://www.lsvtglobal.com/

Voice Aerobics at: http://www.voiceaerobicsdvd.com/

Toastmasters International at: http://www.toastmasters.org/

DBS programming adjustments

The BREATHER­ – this device strengthens and acts like resistance training for respiratory muscles. Information about the BREATHER can be found at the following websites: www.blaismedical.com  www.pnmedical.com  www.beterairways.com

Blowing up balloons – to strengthen lung capacity

Facial steamer

Humid climate or humidifier

Singing in the shower and car

White noise machine – to talk louder than machine to increase my voice volume

Metronome –to pick up the tempo of my voice

I have found that LSVT, Voice Aerobics, the BREATHER, and humid weather sometimes make my voice and speech almost seem normal.

Perhaps this is as good as it gets with PD and DBS. Perhaps I’m greedy and want it all – to talk and dance simultaneously–imagine that! Perhaps I need to lower my expectations and learn to live with it. However, despite my deficits with PD, I’m not ready to give it up and will keep on talking and dancing for as long as possible.

Parkinson's Disease Is No Picnic

I’ll never see Parkinson’s Disease as a gift, blessing, or journey.

Parkinson’s is NO PICNIC.      clip_image002

Parkinson’s is not a friend of mine. Although I’ve met many wonderful people through having Parkinson’s, I would have preferred meeting these folks under different circumstances such as a cocktail party, not a support group.

I’ll never write a book called The Joy of Parkinson’s. I don’t believe that there will be a cure for Parkinson’s in my life time. I’m doomed to be a pessimist.

I think optimism is highly overrated. I’ve tried to convert myself into an optimist, but deep down, I’m really a glass-half-empty kind of gal. According to social psychologist, Roy Baumeister, optimists are more divorced from reality than pessimists. They have high opinions of themselves and show exaggerated beliefs in their ability to control what happens around them. They think their future will be far better than the average person's. On the other hand, pessimists display fewer self-enhancing illusions and are more realistic.

Being a pessimist, I worry about peculiar things such as when the time comes, will I be able to afford living in an assisted living facility or nursing home in the style that I’ve grown accustomed. I fret about when and how I’ll die from Parkinson’s. Will I fall, choke, or develop aspiration pneumonia? Will someone try to prolong my life when its quality is no longer there?

Someone recently accused me of being a DBS (Deep Brain Stimulation) Cheerleader, clip_image004although I’ve never seen myself as a rah-rah kind of girl. I invariably expect things to turn out worse than they do. After having Parkinson’s for 13 years, I was sure that I’d be dead by now. At any moment, I expect that God will drop by, tap me on the shoulder and say, “Sorry, little missy, but your time is up.” It’s that Irish Catholic anxiety syndrome that makes me expect the worst and go through life being fretful.

However, there is an upside to not having a naturally sunny disposition. Being the kind of person who fears the worst, I have often been pleasantly surprised.

You optimists out there, please surprise me. Find the cure for Parkinson’s in my life time and turn Parkinson's into a picnic.

.clip_image006

When Thoughts and Words Are Out of Sync

Once again, Jackie Christensen eloquently wrote about what it is like to live with Parkinson’s Disease. In her Washington Post story, I Can Speak for Myself, If You'll Let Me Do So, Jackie, a Parkinson's patient, eloquently describes the challenges in communication that many of us with Parkinson’s (including me) face.

In fact, Jackie hit the bull’s eye  clip_image002 when she described me and how I sometimes struggle to get the words out. My thoughts are racing like an Olympic runner clip_image004 while my speech is moseying across the road like a turtle.clip_image005

It like an exaggerated version of those TV clips where the audio portion is not synchronized with the video portion.

It’s maddening for me and frustrating for those listening to me as I slowly get the words out. I observe their heads leaning forward until their patience runs out. Someone finally finishes my sentence, and everyone breathes a silent sigh of relief.

As a result, it is sometimes easier for me to ask others like my husband, Tom, to speak for me, or for me not to speak at all.

But read Jackie’s article – it says it all.

Jackie Christensen is a founding member of the Alliance of Parkinson's Health Activists. She is also the author of two books: Life With a Battery-Operated Brain - A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson's Disease and The First Year---Parkinson's Disease: An Essential Guide for the Newly Diagnosed.

Her website is: at http://www.lifewithbobbook.com/

Nebraskans Nailed By Parkinson's

PD and Pesticides Nebraska is the home of my alma mater, Creighton University. Nebraska also has the highest rate of Parkinson's Disease per capita of any where in world. According to the article, Nebraskans Stricken By Parkinson's At High Rate, the numbers are believed to be the result of pesticide toxins that run off from crops into well water systems.

I don't know how these statistics were developed. However, in an effort to find a legitimate way of tracking the incidence and prevalence of Parkinson's and MS, the Parkinson's Action Network is working on getting legislation passed to establish  H.R. 1362: National MS and Parkinson's Disease Registries Act. The Parkinson's community needs this bill enacted because we do not currently have accurate information how many Americans are battling Parkinson's disease, and why. This lack of core knowledge inhibits Parkinson’s research, programs, treatments, and services.

Embarrassed and Flattered

I have to admit that I was both embarrassed and flattered to discover that I was featured in Bob Dawson's blog, Parkinson's Patients: Yes We Can Dance.

From his home in rural Quebec, Canada, Bob monitors the worldwide activities of Parkies who are trying to fend off the monster through dance and music. He spotted me playing my accordion in the flower garden. Thank you, Bob, for sharing my story at: http://parkinsonsdance.blogspot.com/2006/05/chapter-17.html

Reflections on Being Diagnosed with Parkinson's Disease

May is a month full of anniversaries for me - the month I got married, moved to Canada, was diagnosed with Parkinson's Disease and had Deep Brain Stimulation surgery.

Check out my story, "The Answer" about being diagnosed with Parkinson's Disease thirteen years ago on May 8, 1996 at:

http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html

Would You Do It Over Again?

Tomorrow is the 4th year anniversary of my Deep Brain Stimulation (DBS) surgery performed on May 4, 2005. The most frequent question that I'm asked about DBS is: "Would you do it over again?"

With  programming woes for the first two years following DBS, when someone asked this inevitable question, my response was an emphatic "NO!"

After being miserable for two years following DBS, I was blessed to obtain a referral to the University of Colorado Health Sciences Center for reprogramming with Dr. Olga Klepitskaya. With her blend of competence and compassion, she has worked wonders in straightening out my programming problems.

During the past two years, I have been able to:

  • Co-lead a DBS support group and volunteer as a "DBS patient and family liaison" at the University of Colorado Hospital with Valerie Graham.
  • Participate in yoga classes three times a week.
  • Take Broadway dance classes and perform with the Rockyettes dance ensemble.
  • Maintain and continue writing my blog.
  • And most importantly, resume my accordion playing with the Silver Notes accordion ensemble.

Sure, I still have Parkinson's Disease, and my voice is often soft and slurred, but DBS with competent programming has given much of my life back.

If you ask me the same question today, my response is, "Yes, Yes, Yes, I would definitely do it over again."

You can read about  my DBS surgery story, Uneventful Brain Surgery, at:  http://katekelsall.typepad.com/my_weblog/2006/12/uneventful.html

When Swallowing Becomes Complicated

By Mary Jo Cartoni, M.A., CCC-SLP                                                                                   

Copyright © 2009

Before I became a speech-language pathologist (SLP), I never realized how complicated the seemingly simple act of swallowing was for some patients, particularly those with Parkinson’s Disease. These are some answers to frequently asked questions about what to do if you suspect a swallowing problem.

WHAT IS AN MBSS AND HOW DO I GET ONE?

A Modified Barium Swallow Study (MBSS) aka 'videofluoroscopic swallow study' (VFSS) is something your primary care physician can order.

Normal swallowing consists of three phases:

Phase 1: Oral

Phase 2: Pharyngeal

Phase 3: Esophageal

The MBSS is a very simple diagnostic test that looks at the first two phases of swallowing: the oral and the pharyngeal phases. It is sometimes confused with a "Barium Swallow Study" (aka an 'esophagram') which examines the third (final) phase of the swallow, the esophageal phase. 

Be sure a Barium Swallow Study isn't inadvertently ordered if an MBSS is, in fact, the desired test.  It happens more often than one might expect (even though the MD knows which is which, sometimes the person entering the order into a computer makes the wrong menu selection, since the names of these tests are so similar). 

HOW CAN I TELL IF MY SWALLOWING PROBLEM IS LIKELY TO BE OROPHARYNGEAL OR ESOPHAGEAL?

A general rule of thumb is that when someone has difficulty swallowing liquids, the trouble is often an oropharyngeal issue.  Conversely, when someone has trouble swallowing solid foods, this is often an esophageal problem.  Of course, there are always exceptions. For example someone with poor dental health or someone who has weakened oral muscles due to a stroke, might have a problem with solid foods resulting in an oral phase problem.  Conversely, some people with certain types of esophageal phase dysphagia have difficulty with liquids as well as with solids.  Your ordering physician will be able to make the best recommendation in re: to this.

WHO WILL BE PERFORMING THE MBSS?

Speech-language pathologists do MBSS and gastroenterology (GI) physicians do the esophagrams.  People are sometimes surprised that SLPs evaluate and treat dysphagia (swallowing disorders), but when you think of it, the structures used for speech and voice are very much those used in the oral and pharyngeal phases of the swallow.  Currently in hospital settings, I'd estimate that 80-90% of the patients SLPs see daily are those with dysphagia.  In my experience as an SLP, swallowing has really taken precedence over communication and cognition in the acute care setting in the past 20 years.

WHAT IS IT LIKE TO HAVE A MODIFIED BARIUM SWALLOW STUDY?

There's no preparation for the MBSS.  You can eat before the test but don't be too full to eat/drink more when you get there. Those who need dentures or partials to eat just need to have to have them handy.  Patients must be able to follow directions (e.g., if someone isn't a fluent English speaker, we'd need to line up a translator in advance of the study; or if they have a hearing problem, they need to have their hearing aids, or the instructions can be written as needed).  Patients have to be able to swallow well enough to participate in such an exam.  For example, if dysphagia is very severe, (i.e., the patient is not able to reliably produce a swallow) this test is not appropriate, because swallowing has to be possible in order to obtain useful information from this test. 

Typically during the MBSS, the person is asked to eat various consistencies of solid foods (for example, something mushy like apple sauce; something soft but that requires chewing like fruit cocktail; and something hard and dry like graham crackers).  They are also asked to swallow liquid textures such as water and/or soda--and if needed, thickened liquids (often thickened apple juice).  A little barium is added to each of the textures of foods/liquids that are trialed and the person is observed under fluoro (a type of x-ray) as they chew and swallow each bite/sip. They may be asked to drink from a spoon, cup and/or straw. The person may also be asked to swallow a barium pill to evaluation pill swallowing. 

IN GENERAL, WHAT ARE THE OBJECTIVES OF AN MBSS?

1. To determine the presence/absence of "penetration" (when material approaches the airway (wind pipe) but does not go below the level of the vocal cords) and/or "aspiration" (when material enters into the airway below the level of the vocal cords) and whether this is "silent" (no cough response) or if a reflexive cough or throat clear is generated / how effective this was in clearing the material. 

2. To determine the specific reasons for penetration/aspiration, if present.  That is, what specific aspect(s) of the oropharyngeal swallow is/are not working correctly and thereby resulting in penetration/aspiration?

3. To determine the effectiveness of various compensatory strategies, for example, is it helpful to employ a head turn or tilt, chin tuck, multiple swallows, breath hold techniques, effortful swallow, throat clear, modification of the size of the sip or bite, texture variants, and others.  Each technique targets the particular cause of penetration or aspiration, and for this reason, a chin tuck will not be helpful for everyone and in fact, can make aspiration worse in some people.  The strategies selected to trial will be dependent upon the findings of the MBSS.

It's important to also realize that even though 3-5 minutes of images are usually obtained during an MBSS, it is in fact, a "snapshot" of a person's swallow. Other factors that can skew the findings can include presence/absence of fatigue; pain; whether a person is "on" of "off" medications, etc.

In a nutshell, the goals of an MBSS are:

1.) To tell if penetration/aspiration is present;

2.) If so, why it occurred (what part of the oropharyngeal swallow sequence wasn't working just right); and

3.) Which, if any, strategies or techniques are effective in preventing or limiting penetration/aspiration.

SHOULD I HAVE AN MBSS DONE FOR BASELINE INFORMATION BEFORE I HAVE SYMPTOMS OF DYSPHAGIA (SWALLOWING PROBLEMS)?

Getting an MBSS before it's really needed, is not necessarily a great idea.  Presumably it will just show that you have a normal swallow.  There is a substantial amount of fluoro exposure with these tests, so unless there is a specific problem to observe, it doesn't make sense to do one.  People can have repeat MBSS when warranted, though. It's not as though you can only have one or two, but you need to be conservative re: their use. 

AFTER THE MBSS, WHAT ARE MY OPTIONS?

There are a number of dysphagia therapy options.  These are often initiated after the MBSS so that treatment focus may be directed at the problem areas of the swallow as identified by the evaluation. Over time, the effectiveness of such treatment can be impacted by any progressive aspects of the underlying diagnosis, but that shouldn't prevent anyone from initiating therapy, since the progression of such diseases/conditions can vary so much from one individual to another.  Most of us would opt for doing whatever we can to maintain maximal swallow status for as long as possible.  The SLP who performs the MBSS can make the best recommendations re: follow-up treatment options.

Postscript from Mary Jo Cartoni:

Because my focus was to tell you more about the MBSS, I realize that I neglected to mention that swallowing can also be evaluated clinically.  In other words, an SLP can evaluate swallow function without diagnostic imaging, such as an MBSS, in an outpatient office visit, or at the bedside, if the person is a patient in the hospital.  In fact, this type of clinical evaluation is often done first, with the MBSS following, as needed. 

A clinical/bedside swallow evaluation is very similar to the MBSS in that the person is asked to swallow a variety of textures (but no barium needed) and is observed by the SLP for clinical signs and symptoms of aspiration (coughing, wet/gurgle-like vocal quality, throat clearing, etc.)  Various swallowing techniques/strategies can be trialed, as with the MBSS, depending upon the results.  The advantage of a clinical swallow evaluation is that there is no fluoro exposure. The disadvantage is that there are no images obtained.  However, a clinical swallow evaluation can be very effective when performed by an experienced SLP. 

In the hospital where I work, most of our in-patients are treated for swallowing based upon the results of their clinical swallow evaluations.  Those patients that are more challenging to evaluate/treat clinically receive MBSS evaluations.  With outpatients, often the person's MD has determined that an MBSS is the appropriate first step, and so in that scenario, the MBSS is performed rather than the clinical swallow evaluation.

Related Article:

When Swallowing and Breathing Get Out of Sync at:                                          

http://katekelsall.typepad.com/my_weblog/2009/04/when-swallowing-and-breathing-get-out-of-sync.html

Caring for the Hospitalized Parkinson's Patient

Patients with Parkinson’s Disease (PD) often have a bittersweet experience when hospitalized. The bitter part is that they are often cared for by staff lacking in knowledge and information about PD, while the sweet part comes when they are discharged, sent home and start to feel better.

Many of the problems that PD patients encounter in the hospital relate to medications, such as wrong medications being dispensed or correct medications not being dispensed on a timely basis or not at all.

Some PD patients find their PD symptoms worsen while in the hospital. One possible cause is the introduction of new medications in the hospital and how they interact with PD medications.

Some PD patients who have had deep brain stimulation (DBS) experience problems because their hospital and surgical staff are not familiar with this surgery.

Also, it is often difficult for the PD patient to act as his/her own advocate while hospitalized.

I was delighted to find a comprehensive document that addresses all of these issues. Parkinson’s Resources of Oregon and the Parkinson Center of Oregon at the Oregon Health and Sciences University developed a document called the Critical Information for Caring for the Parkinson’s Patient. The PD patient should complete this document before being hospitalized and copies should be taken to the hospital when being admitted.

This document allows the patient to have some control over his hospital care. It also acts as a wonderful educational tool about PD for the hospital staff.

Check out Critical Information for Caring for the Parkinson’s Patient at: http://www.spokaneparkinsons.org/info.pdf

It just might change your hospital experience from a bitter to a sweet one.

Additional Information:

Helping Parkinson’s Patients with Hospitalizations at http://katekelsall.typepad.com/my_weblog/2007/07/helping-parkins.html

Parkinson's Disease Forces Good Change

By Carolyn Allen Zeiger, Ph.D.  Copyright © 2009

What!?! How can the unsought, challenging life changes forced on us by PD be a good thing? For me this has at least two answers:

1. As a theologian friend said recently, “Sometimes our service to humanity is chosen, and sometimes we are drafted.” I was definitely drafted into my service to humanity via PD! The first type of service I offer is to one person: my husband. Even when it is only one person, still it is service to humanity to take on the responsibility for supporting a person through a progressive, degenerative disorder ‘til death do us part. The second is to my brother, to whom, for the first time, I am no longer one of several “little sisters,” rather, almost a big sister to whom he turns for information and support.

Parkinson’s has also pulled me into a larger form of service in the work I am doing individually, and together with my husband, in serving the community of those with PD plus their families and friends who support them.

2. Another good change is that Paul and I are bringing together our diverse training, skills and careers into an activity—and service—that we do together. Given that due to PD and financial constraints we must basically stay home and be together most of the time, this is a wonderful new way of life. It gives us something we can do together that is good for others, and therefore meaningful to both of us, and also fun.

3. OK, more than two answers. Our PD related work has also turned into yet another career for us both that is bringing us needed income as Paul’s medical expenses increase and the income from our investments decreases!

4. Doing this work together also is making it possible for Paul to continue doing work he loves that he could no longer do on his own, so it is even a form of therapy for him.

5. What’s more, Paul has cared for me through some serious medical problems over the years, and it feels good to do the same for him.

6. Wow! I am now up to number 6. This one is about as fundamental as you can get. Sogyal Rinpoche, a Tibetan Buddhist teacher, has said that how well we die is closely tied to how well we learn to navigate change during our lives. This makes such sense to me. The two most fundamental changes in life are birth and death: the transition into life and then out of life. The latter is the one change that we can prepare our selves for, throughout our lives, not just at the last gasp.

At the point in our lives when we are most likely to become rigid and devoted to maintaining “things as they are,” Paul and I have been called upon to make some drastic changes in our lives, and our sense of who we are and are not. Thinking of this as training for making the Big Change in years to come, (or at any moment) has inspired me to embrace these changes as opportunities to grow, to enhance my ability to relax into change, see the opportunities for transformation and even delight. To get some “oh, boy!” out of it instead of “oh, no!” To see myself as getting desired training instead of being on a grim forced march.

Of course I don’t feel this way every day, let alone every minute. It is more like a reminder when I am feeling overwhelmed or put upon. Choose it! Embrace it! Go with it! I sat with my mother as she died, holding her hands and looking into her eyes, and that is exactly how she went out—like an athlete who had prepared for the final event. Moving forward instead of resisting what ultimately cannot be resisted.

 

Carolyn is a clinical, organizational and health psychologist. Her husband, Paul Zeiger, Ph.D. has become well known as a yoga teacher with PD who teaches yoga to others with PD. She is his assistant in his classes for the Parkinson Association of the Rockies and also with his private students.

This article was originally published in the Winter 2009 edition of the Iowa APDA newsletter, The Informant. It is reprinted with permission from Iowa APDA and the author.

When Swallowing and Breathing Get Out of Sync

My mother-in-law and mother had something in common. They both died in their eighties with the same cause of death on their death certificates:  Parkinson’s Disease (PD). Technically, the cause of my mother’s death was Lewy Body Dementia (LBD). Perhaps the doctor that pronounced her dead determined that PD and LBD were one and the same condition, although from my observation, LBD is a more debilitating combination of PD and Alzheimer’s.

My mother-in-law’s and mother’s death certificates were different in that my mother-in-law’s certificate indicated an additional cause of her death was dysphagia or difficulty swallowing.

My mother also had swallowing problems as the swallowing test given four days before her death revealed that she was unable to swallow ANY food or liquids. Why they waited so late in her life to administer a swallowing test remains a mystery to me.

Living with PD, I also experience swallowing problems. I frequently feel like I’m choking when I drink thin liquids such as water or tea or eat crusty bread. I often cough when it feels as though the food or drink has “gone down the wrong tube.” No one at any of my neurology appointments has ever inquired about my swallowing issues. However, I’ve been asked at every appointment about the frequency of my falls. I boast that I’ve only fallen twice – once in 2003 and once in 2004. But if anyone bothered to ask about swallowing, they would discover that unlike falling, swallowing problems are an every day occurrence for me.

Many PD patients experience dysphagia or swallowing problems. This can lead to aspiration pneumonia, which is an inflammation of the lungs and bronchial tubes due to breathing and inhaling foreign material such as foods or liquids into the lungs. This can result in death from PD (or the sugar-coated version described as “death from the complications of PD”). Given my background, you can understand why I’m terrified of choking to death. I’m afraid of “like mother-in-law, like mother, like daughter.”

Roxann Diez Gross, PhD and her colleagues have reported on this topic in “The Coordination of Breathing and Swallowing in Parkinson’s Disease” in the June 2008 issue of Dysphagia (published online November 20, 2007). Their research indicated:

· The high incidence of dysphagia and risk of aspiration pneumonia found in PD patients may be partially attributable to impaired coordination of breathing and swallowing.

· Aspiration pneumonia is a major cause of morbidity and mortality in PD patients.

· Dysphagia can develop at any point in the PD process. The severity of PD cannot predict the presence or severity of dysphagic impairment of PD patients.

· Healthy adults without PD exhibit an exhale-swallow-exhale pattern to coordinate breathing and swallowing.

· PD patients are more likely to swallow at abnormal times within the respiratory cycle, such as during inhalation.

· PD patients are more likely to inhale during and after swallowing.

· The lack of proper coordination of breathing and swallowing may be an important factor underlying dysphagia and place PD patients at risk for aspiration pneumonia.

***

So what’s a PD patient to do? I’m stumped, but I’ll contact Dr. Roxann Diez Gross and ask for her suggestions.

The following is the response from Roxann Diez Gross, PhD:

I love that you pointed out how the doctors don’t think to ask about swallowing. One of the problems with PD is that there can be little awareness of the condition. In a current study that I am collecting data on, I found that 6 out of 10 PD participants had significant dysphagia that they were not aware of. Two subjects were silently aspirating.

As to what to do:

1. PD patients should tell their doctors if they suspect a problem and get a swallowing evaluation. The evaluation should be fluoroscopic (x-rays) called a MODIFIED barium swallow (not a standard barium swallow or upper GI) or and endoscopic evaluation called a FEES (fiber optic endoscopic evaluation of swallowing).

2. I feel that if a problem is discovered, that the therapist should not just give PD patients exercises for strength, but they should look at breathing and swallowing coordination. PD patients should assure that they have adequate air in their lungs before swallowing (same as with speech). If the lungs have sufficient air, exhalation will likely follow. I teach patients to hold a small amount of pudding or liquid in their mouths, inhale through the nose and swallow before letting any of the air out. I also teach them to be aware of the nice long exhalation that should follow.

Roxann Diez Gross, PhD
Assistant Professor of Otolaryngology
Director, University of Pittsburg Medical Center Swallowing Disorders Center
Pittsburg, Pennsylvania

Physical Therapist Helps Parkinson's Patients Move It!

Move It! An Exercise and Movement Guide for Parkinson's Disease

Book and DVD by Kevin Lockette, PT

As a physical therapist, Kevin Lockette has worked with people with Parkinson’s Disease for the past 20 years. His goal is to keep those with Parkinson’s moving. His unconventional techniques and exercises are illustrated in his new book and demonstrated in his companion DVD called Move It!

Move It! is a complete movement, exercise and resource guide for people with Parkinson's Disease. The book and DVD illustrate techniques and demonstrate exercises with people who suffer from Parkinson’s, and includes:

· An overview of physical symptoms

· Medication review in easily understandable terms

· Techniques and tricks for improved mobility including bed mobility, transfers, and walking

· Anti-freezing techniques that really work

· Adaptive devices for easier everyday living

· Complete exercise programs specific for Parkinson's Disease for all physical levels (beginner, intermediate and advanced)

· Complete guide and exercise program for flexibility

I like that Move It! is an exercise program that addresses the specific needs of Parkinson’s patients at various physical levels. Kevin has developed clever techniques to remedy common problems of those with Parkinson’s. For example, his tip for dealing with a freezing episode is the Poor Man’s Hula.

It is very important for me to keep moving with Parkinson’s, and following the Move It! program may allow me to do so for as long as possible. I highly recommend it.

Further information on Move It! is available at: http://www.parkinsonsmoveit.com/home

About the Author:

Kevin Lockette has been practicing as a physical therapist in the rehabilitation field since 1989. He was a past president of HAPTA (Hawaii Chapter of the American Physical Therapy Association) and the primary author of a medical text on rehabilitation, Conditioning with Physical Disabilities, Human Kinetic Publishers 1994.

Kevin has extensive experience in acute rehabilitation and is the founder of what is now the nation's largest wellness program for individuals with physical disabilities at the renown Rehabilitation Institute of Chicago. Kevin is a past head coach for the United States Disable Sports Team (A member of the U.S. Olympic Committee) and coached in International games including the World Championships and the Paralympics in Barcelona, Spain in 1992. Kevin is presently on the Clinical Advisory Council for the Multiple Sclerosis Society-Hawaii.

Kevin enjoys canoe paddling. He is also an avid basketball fan and attends UH sports whenever he can. Kevin is not only a physical therapist, but also father of two, an athlete, and non-fiction history buff. He is musically inclined in the harmonica and ukulele with a love for the blues.

A Patient's First Hand Account of Living with a Battery-Operated Brain

Just in time for Parkinson’s Awareness Month in April is the book:

Life With a Battery-Operated Brain – A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson s Disease

By Jackie Hunt Christensen, to be released on April 15, 2009. 

What I like best about this book:

· It is written by a Deep Brain Stimulation (DBS) patient and for patients and their families considering DBS.

· It provides an easy-to-understand, step-by step guide through the entire DBS process (DBS is not an event, but a process, says the author).

· The book provides checklists of questions to ask the neurosurgeon, programmer, and others involved in the DBS process.

· The book has illustrations, photos, appendices with links to other valuable information, with excerpts from the author’s personal journals and opinions from other DBS patients.

· The book includes topics such as the DBS evaluation process, making the decision, the logical tasks required in preparing for surgery including psychological preparedness, the impact on the family, a detailed description of what actually happens in surgery, the programming process, care and maintenance of DBS, side effects of DBS and alternatives to DBS.

· It gives power back to DBS patients, arming them with information and questions that they might not have considered.

· It’s the kind of book that I wish had existed when I was going through DBS.

I highly recommend this practical guide to DBS. In fact, I like the book so much that I wish I had written it myself.

Further information about Life With a Battery-Operated Brain – A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson s Disease can be obtained at: http://www.lifewithbobbook.com/

I Cannot Tell a Lie

lie   When did honesty become a vice, not a virtue?

A recent study in Japan revealed that:

  • Patients with Parkinson’s Disease are frequently described as 'honest', indicating that they have a tendency not to deceive others.
  • Patients with Parkinson's Disease (n = 32) had difficulty making deceptive responses relative to healthy controls (n = 20).
  • Dishonesty may actually be associated with dysfunction of specific brain regions affected by Parkinson’s Disease.
  • The ostensible honesty found in patients with Parkinson's disease has a neurobiological basis.

I always thought that honesty was a positive character trait, whether or not one had Parkinson’s. Night after night dishonest Wall Street types and chronic liars are featured and glorified on television. The honest boring folks with Parkinson’s are seldom admired.

I was never good at telling lies. I could never call work, pretending to be sick when I wasn’t. The few times in my life that I tried to lie, I was a miserable failure. I marvel at how chronic liars can keep it all straight. It must be their executive functioning skills.

Perhaps my poor lie-telling skills are related to my predisposition toward Parkinson’s. Perhaps my inability to lie is a result of all those years of Catholic education in elementary school, high school, and university. Perhaps I am dishonesty-challenged because I have the same prefrontal cortex dysfunction that so many of us with Parkinson’s are blessed with.

Whatever the reason, I must confess: I cannot tell a lie.

Journal Reference:

From:  http://www.ncbi.nlm.nih.gov/pubmed/19339257

1: Brain. 2009 Mar 31. [Epub ahead of print]

Do parkinsonian patients have trouble telling lies? The neurobiological basis of deceptive behaviour

Abe N, Fujii T, Hirayama K, Takeda A, Hosokai Y, Ishioka T, Nishio Y, Suzuki K, Itoyama Y, Takahashi S, Fukuda H, Mori E.

1 Department of Behavioral Neurology and Cognitive Neuroscience, Tohoku University Graduate School of Medicine, Sendai, Japan.

Parkinson's disease is a common neurodegenerative disorder with both motor symptoms and cognitive deficits such as executive dysfunction. Over the past 100 years, a growing body of literature has suggested that patients with Parkinson's disease have characteristic personality traits such as industriousness, seriousness and inflexibility. They have also been described as 'honest', indicating that they have a tendency not to deceive others. However, these personality traits may actually be associated with dysfunction of specific brain regions affected by the disease. In the present study, we show that patients with Parkinson's disease are indeed 'honest', and that this personality trait might be derived from dysfunction of the prefrontal cortex. Using a novel cognitive task, we confirmed that patients with Parkinson's disease (n = 32) had difficulty making deceptive responses relative to healthy controls (n = 20). Also, using resting-state (18)F-fluorodeoxyglucose PET, we showed that this difficulty was significantly correlated with prefrontal hypometabolism. Our results are the first to demonstrate that the ostensible honesty found in patients with Parkinson's disease has a neurobiological basis, and they provide direct neuropsychological evidence of the brain mechanisms crucial for human deceptive behaviour.

PMID: 19339257 [PubMed - as supplied by publisher]

Parkinson's Linked to Vitamin D Deficiency

If you have Parkinson’s Disease, you have more than a 50/50 chance of having low levels of vitamin D. I was shocked to learn that vitamin D deficiency was found in Parkinson’s patients in a study done by Emory University.

Participants in the study who had vitamin D insufficiency were the following:

55% of Parkinson’s patients

41% of Alzheimer’s patients

36% of healthy elderly in the control group

Most Americans get their vitamin D from exposure to sunlight or by dietary supplements, while fortified foods such as milk or cereals are a minor source.

Patients with Parkinson’s have mobility problems which frequently limits them going outdoors and being exposed to the sun. In addition, the body’s ability to produce vitamin D from the sun reduces with age.

Vitamin D deficiency is associated with a higher incidence of osteoporosis, falls and hip fractures. Vitamin D supplements may reduce these risks. The type and dosage of vitamin D makes a difference. Doses under 400 international units and vitamin D2 have no discernible effect whereas doses over 400 international units and vitamin D3 have a significant effect.

More investigation is needed to determine whether vitamin D deficiency can cause or be the result of having Parkinson’s.

Tip: Consult your doctor about your vitamin D level and if a supplement is needed, discuss taking a vitamin D3 supplement at a dosage more than 400 international units per day.

Journal reference:

1. Evatt et al. Prevalence of Vitamin D Insufficiency in Patients With Parkinson Disease and Alzheimer Disease. Archives of Neurology, 2008; 65 (10): 1348 DOI: 10.1001/archneur.65.10.1348

Adapted from materials provided by Emory University.
Emory University (2008, October 13). Lack Of Vitamin D Linked To Parkinson's Disease.

Lack of Vitamin D Linked to Parkinson's Disease at: http://www.sciencedaily.com/releases/2008/10/081013171503.htm

Vitamin D Pills May Prevent Fractures in Older Adults at:  http://www.nytimes.com/2009/03/31/health/research/31aging.html?_r=1&em

Parkinson's Elicits Many Emotions

I was fidgety and nervous, yet inspired and hopeful when watching Michael J. Fox on the Oprah show yesterday. Kathleen Reardon said it best in her piece:

Oprah Winfrey Gives Parkinson’s a Much Needed Facelift at:

http://www.huffingtonpost.com/kathleen-reardon/oprah-winfrey-gives-parki_b_181486.html

SHAKEN Premiering on PBS

I am thrilled that the award-winning documentary, SHAKEN: Journey into the Mind of a Parkinson's Patient, will be enjoying nationwide broadcast on PBS starting April 1, 2009.

Check out station information and broadcast times for your city at:

www.lilafilms.com/shaken_screenings.htm

For those who have already seen SHAKEN, you don’t want to miss this updated version which includes a follow-up on Paul Schroder, the Parkinson’s patient in the film.

Related Story:

The Documentary Shaken at:  http://katekelsall.typepad.com/my_weblog/2006/10/the_documentary.html

Take Charge of Parkinson's Without Leaving Home

Taking Charge of Parkinson’s FREE Webcast

Hosted by the Parkinson's Disease Foundation and the Houston Area Parkinson Society
Houston, Texas
Saturday, April 4, 2009
10:00 AM to 3:00 PM

The fourth installment of Parkinson’s Science: Innovations and New Perspectives will take place on Saturday, April 4, 2009 in Houston, Texas, in collaboration with the Houston Area Parkinson Society. The event will explore actions - such as exercise and creative activities - that may improve your daily life with Parkinson’s disease (PD). The event will be available to a live audience and will also be available to view live on the web.

Registration for the live event is now FULL.

Registration for the LIVE webcast is still open.

Register to watch via webcast

http://event.netbriefings.com/event/pdf/Live/takingcharge/register.html

Details about the day's presentations are available below:

9:00 AM – 9:55 AM

Registration

********************************

9:55 AM – 10:00 AM

Opening Remarks
Anne Thobae
Executive Director, HAPS

********************************

10:00 AM – 10:50 AM

Improving Brain Function with Exercise and Creativity: You Too Can Do It
Julie H. Carter, R.N., M.S., A.N.P.
Oregon Health and Science University

********************************

10:50 AM – 11:05 AM

Break

********************************

11:05 AM – 12:00 PM

Does Exercise Influence Parkinson's Disease?
Giselle Petzinger, M.D.
University of Southern California

********************************

12:00 PM – 12:45 PM

LUNCH

********************************

12:45 PM – 2:25 PM

Taking Charge of Your PD Through Music and Dance

Shall We Dance?: Benefits of Tango for People with Parkinson's Disease
Gammon M. Earhart, Ph.D., P.T.
Washington University School of Medicine

I've Got Rhythm: The Power of Rhythm and Music to Benefit Those with PD
Concetta Tomaino, D.A., MT-BC, LCAT
Beth Abraham Family of Health Services

********************************

2:25 AM – 2:55 PM

Q & A Panel

********************************

2:55 PM – 3:00 PM

Closing Remarks
Robin Elliott
Executive Director, PDF

********************************

It Takes Two to Tango

“It takes two to tango, two to tango
Two to really get the feeling of romance
Let's do the tango, do the tango
Do the dance of love.”

tango frogs

I should have been suspicious when reading the course description of the tango class sponsored by the local senior center. "Argentine Tango: This dance will touch your romantic soul. In this introductory class, you will learn what it takes to lead and follow. We’ll start in open embrace and progress to close embrace. No experience is needed and no need for a dance partner.”

My husband, Tom and I have had a brief history of couples dancing. In a ballroom dancing class about 25 years ago, the teacher, a burly German woman, grabbed me while her partner, a petite German man, snatched Tom to demonstrate a dance step. We quickly waltzed out of that class during the break, never to return to ballroom dancing.

Line dancing classes were a bit easier to manage because the difference in our heights wasn’t a factor (Tom is 6’4” and I am 5’1” and shrinking). But then we got older and memorizing the sequences of the line dancing steps became a struggle.

I had heard about the benefits of tango for Parkinson’s patients, and I wanted to give couples dancing another try. I coaxed and cajoled Tom to take a tango class with me, and he reluctantly agreed.

When we arrived at the class, tango music was blaring from the boom box. Three young couples and a single woman were nervously waiting for the class to begin. Then, the instructor, a tall blond woman from Boulder not Argentina, instructed us to “face your partner and stand closer together than you would in most other ballroom dances – close enough that your torsos are touching.” Our torsos were touching, which meant that my head was facing Tom’s lower rib cage. 

We were further instructed that the leader of the couple (Tom) was to place his right hand on the middle of my lower back and for Tom to extend his left hand out to his side with his arm bent while grasping my right hand in a loose grip. As the follower, I was to place my left hand on Tom’s right shoulder while placing my right hand in Tom’s palm with my elbow bent. By then, I was on my tiptoes trying to reach Tom’s shoulder and hand. Now that we were “comfortable,” we were instructed on how to do the tango walk – Tom walking forward and I walking backwards. Every several minutes the tango teacher ordered us to switch partners and to change positions from leader to follower. Reflecting back on that night is mostly a blur except for the pain of walking backwards for an hour.

After the lesson, Tom and I agreed that the tango is much too intimate of a dance to stand torso to torso with a stranger while in open embrace and progressing to a close embrace.

We decided to stick to dances of the past where we can dance independently without a partner – dances like the twist, pony, mashed potato and swim – recognizing that it takes two to tango.

Genetic Test for Parkinson's Disease for $25

March 12, 2009

Michael J. Fox Foundation Joins Effort to Recruit 10,000 People with Parkinson's Disease to New Web-based PD Research Community

The Michael J. Fox Foundation for Parkinson’s Research, together with personal genetics company 23andMe of Mountain View, California, and The Parkinson’s Institute and Clinical Center of Sunnyvale, California, announced a call for 10,000 people with Parkinson’s disease to join an ambitious new research community. The goal of the community is to empower individuals with PD to proactively impact research in real time, potentially helping to speed early-stage scientific discoveries toward practical therapeutic relevance in treating Parkinson’s disease.

The 23andMe Parkinson’s Disease Community, conceived and led by 23andMe, is a novel attempt to leverage DNA technology, the Internet, and patient participation to enhance scientific understanding of Parkinson’s disease and the field’s ability to develop breakthrough treatments.

“Exploring the potential of a Web-based approach to patient engagement for research purposes is well-aligned with our Foundation’s mission,” said Katie Hood, CEO of The Michael J. Fox Foundation.

For the past year, the Foundation has been funding a partnership between 23andMe and the Parkinson’s Institute and Clinical Center to develop Web-based tools and surveys to gather information from a community of PD patients in a scientifically meaningful way. That project is still in development. In the interest of ensuring that the surveys can be put to immediate use once they are ready, 23andMe and the Parkinson’s Institute are now formally beginning the work of building the community.

To accelerate this community’s growth, through March 22, 23andMe is sponsoring up to 10,000 people with Parkinson’s to join the community for $25 instead of the usual $399. To be eligible for this discounted rate, individuals must have been diagnosed with Parkinson’s by a physician, be willing to provide a saliva sample for genetic analysis, and agree to participate in online surveys about their experience with Parkinson’s. Participants’ data will be kept anonymous, but will contribute to a larger pool of data about the PD community that will inform various Parkinson’s research efforts over time.

In addition, members will have full access to the 23andMe Personal Genome Service™, which includes detailed, personalized reports across many health conditions and traits, including PD. They will also have the opportunity to share their experiences directly with others in the 23andMe community who have Parkinson’s or who carry genetic markers placing them at increased risk for developing the disease.

More information on joining the community -- including information on how people with Parkinson's can obtain a discount code to participate in the limited-time reduced rate of $25 -- is available at http://michaeljfox.org/23andme.cfm

Related Article:

Google Co-Founder Backs Vast Parkinson's Study  by Andrew Pollack 
New York Times

 

Apathy as a Virtue

Jean from Columbia, Missouri responded to What Difference Does It Make: Apathy and Parkinson’s with the following:

“Darn!!!  I thought that I was becoming a better person, mellower and less confrontational.  I thought that I had finally developed the good sense to know which battles to fight and which to just let slide.  But now I learn from your website that what I thought was a VIRTUE is really just a SYMPTOM--apathy.

Drat, phooey, and rats!  I think that I'll just ignore the diagnosis and keep believing that Parkinson’s has given me a new perspective and greater tolerance.  I think that I'll keep apathy in the VIRTUE column.  I kind of like the new, more tolerant, me.”

***

I can be just as virtuous as the next gal. But I am less tolerant than Jean and still struggle with picking and choosing my battles. Perhaps a little dose of apathy might be the antidote for my Parkinson’s woes.

All Shook Up

On October 17, 1989 the San Francisco Bay area buzzes with excitement about baseball. The Oakland Athletics and San Francisco Giants, both local teams, are scheduled to play in the World Series at 5:30 PM. at San Francisco’s Candlestick Park.

South of San Francisco in Redwood City, I don’t focus on baseball because I am absorbed in my work as a CPA at an accounting firm. Dressed in my beige business suit and beige pumps which match the beige walls of my office, I scrutinize the numbers of the spreadsheet, calculating the personal and community property of one of my marital dissolution clients.

I glance out my office window and view a cloudless, blue sky and palm trees standing like guards in the late afternoon sun. A few minutes past 5 PM and without warning, the one-story brick office building begins moving both horizontally and vertically, like shaking up a Cracker Jack box. Someone shouts “earthquake.” Colleagues seek refuge under door frames or huddle under desks. Joining them, I brace myself under the door frame. There is no conversation just a fearful anticipation. Ceiling tiles pop, and dust streams down. A chemical smell emanates from a nearby copier and stings my eyes. I hear sounds of file cabinets flying open, books falling off shelves, pictures bouncing off walls, glass shattering and chairs moving. Then everything goes silent.

I later discover that at 5:04 PM a 7.1-magnitude earthquake struck the San Francisco Bay area and the tremor which felt like 15 minutes lasted a mere 15 seconds. There were more than 10,000 aftershocks over the next few weeks. What I didn’t realize is that the earthquake would be a precursor of shaky times ahead for my career and my health.        

                                                                      Earthquake-1 

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