Shake, Rattle and Roll

Choices

By Diane M. Marty

Copyright © 2012

In retrospect, there had been some chilling clues.

I had shrugged off my personal trainer’s observation that my left arm didn't straighten completely. I had felt like an imposter in an advanced knitting class when my fingers fumbled at the familiar task of casting on stitches. And I had laughed uneasily when my spouse teased me about falling asleep in a noisy Las Vegas restaurant.

So, when a friend asked me what was wrong with my arm, my reply was ready. Maybe too ready. Probably carpel tunnel, I told her. If my new ergonomic keyboard didn’t relieve the stiffness, some physical therapy would surely cure the problem, I added with a quaking conviction.

When a doctor delivered the diagnosis of Parkinson's disease, I was shocked—and yet I wasn’t.

Life can change in the single beat of a hummingbird’s wings. And some changes are not for the better.

Sometimes, we’re left sifting through ashes of what had seemed a steady and sturdy world, the stunned look on our faces evidence of an inescapable eruption.

Now, many people who have stared down physical challenges extol the insights that came with their hardships, especially when talking to the untouched. The personal growth! The newfound liberation! The streamlined clarity!

It’s true. Contact with life’s fragile constitution resets perceptions and priorities—my own included. I won’t deny that I’ve discovered rapture embedded in the ordinary. A baby’s head resting on my shoulder. Scarlet petals bursting from tight buds in the garden. The expansive freedom of driving fast under a starry sky.

And I’ll admit that sharing time with friends and family has a heft and a force that overrules the tilting stacks of dirty dishes, the drops of red wine on white carpet or the sudden sagging of energy.

Yet, beneath this sweet shift in reality lies a bitter truth.

And that is that any one of us affected by life-altering challenges would exchange our enlightenment for the blind arrogance of an indefinite future and the blissful hubris of a healthy body.

But trading is not an option.

Instead, my choice comes down to this. Today, I am better than I'll ever be again. It’s that simple. I can spend my time contemplating the future with foreboding, or I can concentrate on the present.

I've made my decision. Every moment counts. Every day.  

© 2012 Diane M. Marty

Since her diagnoses in 2005, Diane Marty has done things she never considered doing before that point—like eaten gelatin with vegetables and worn black with brown. However, she has yet to purposefully look down into a reflective surface. Diane can be reached at [email protected].

 

 

Awkward Hands Move at a Snail’s Pace

One of the most troubling symptoms for those with Parkinson’s is bradykinesia, which is just a fancy word for slow movement. I’m grateful (alleluia) that my tremor and dyskinesia have subsided with help from a great Deep Brain Stimulation (DBS) programmer and medication adjustments. However, I continue to be plagued by slow and stiff movement, particularly in my hands. I find it ironic that before Parkinson’s, I could talk and walk fast, eat quickly, play the accordion at a fast clip, type 99 wpm without errors, complete university in three years, work three jobs simultaneously, and overall function as an efficient and fast-moving person. People previously described me as an Instant Person.

With Parkinson’s, particularly when my medication and DBS stimulation aren’t working at an optimum level, life seems in slow motion and particularly my hands move at a snail’s pace. For example, sometimes buttoning my blouse, zipping my jacket, turning the key to open the door, folding a sheet of paper and putting it in an envelope, putting a stamp on an envelope, handwriting, taking coins and bills out of my wallet, eating with a fork, preparing or cutting food, putting on makeup--all can seem like insurmountable tasks with my awkward hands. No fast-moving hand-jive for me.

While it is possible that occupational therapy could help with my awkward hands and improve the speed of my fine motor skills, it is more likely that medication and DBS programming adjustments would help.

For now, I resort to setting my alarm clock an hour earlier than I would if I didn’t have Parkinson’s, knowing that my hands are likely to move at a snail’s pace.

Preventing Misdiagnosis

I was alarmed when reading the study The evolution of diagnosis in early Parkinson disease. Parkinson Study Group published in Arch Neurol. 2000 Mar;57(3):369-72,  which stated that:

“Previous studies concluded that initial diagnoses of PD made by general neurologists were incorrect in 24% to 35% of the cases when patients were examined at autopsy. Experts in movement disorders are expected to have greater accuracy of initial diagnosis of PD.”

I was one of the “lucky” ones. I went to a general neurologist when I observed a tremor in my left hand 15 years ago. I was diagnosed with Parkinson’s Disease at the age of 46. In my case, the neurologist ruled out benign essential tremor (a misnomer, as there is nothing benign about it), brain tumor, Wilson’s Disease and Lou Gehrig’s disease. I was ”lucky” that I was diagnosed and received treatment so quickly, unlike others who go for years and years, from doctor to doctor, without an accurate diagnosis and receive either no or inappropriate treatment. I was able to avoid those condescending comments from doctors such as “it’s all in your head” that hard-to-diagnose patients often receive. These patients later discover that it was indeed all in their heads, but not in the way that they originally thought.

When patients are struggling to get a diagnosis, I often suggest that they get an opinion from a movement disorder specialist. A movement disorders specialist is a neurologist who has taken additional training in the subspecialty in neurology called movement disorders. Movement disorders specialists are often involved in research and/or teaching in addition to their clinical concerns and are more typically found at major medical institutions. Such professionals typically follow a greater number of patients with these disorders and are generally more experienced in the use of the various medications (and their combinations) as compared to a general neurologist, an internist or general practitioner.

The topic of misdiagnosis is being discussed this week at the 15^th International Congress on Parkinson's Disease and Movement Disorders in Toronto, Canada. Betsy Vierck reports on this topic from the Congress at: http://www.recentlydiagnosedwithpd.org/home/2011/6/7/report-from-toronto-kudos-to-these-docs.html

Related Article:

Steps to Finding a Movement Disorder Specialist by Beka Serdans, RN, MSN http://www.care4dystonia.org/newsletter/StepstoFindingaMovementDisorderSpecialist.pdf

 

 

 

Reminiscing about Mom

 
Photo of Marge Doyle (Mom)

“Yesterday is history.  Tomorrow is a mystery.  And today?  Today is a gift.  That's why we call it the present.”  ~Babatunde Olatunji

On Mother’s Day today, I find myself reminiscing about Mom.

On May 8, 1996, 15 years ago today, Mom was in Rome, Italy on a well-deserved vacation with her two sisters.  She had taken care of her ill husband, my Dad, for nearly 10 years. He had died about six months earlier in November of 1995. Mom was looking forward to this vacation starting with a tour of the Vatican. While climbing with her little legs out of the tall old-fashioned bathtub in the hotel in Rome the night before her tour, she fell hard on the tile floor and broke her back. She was in the Rome American Hospital in Italy for a week and flew home to Kansas City with an escort. Mom was robbed of that much needed vacation. Her back still hurt when she died in October of 2008. Three years before she died, she was also diagnosed with Lewy Body Dementia.

On that same day 15 years ago in Colorado, I was diagnosed with Parkinson’s Disease.  I remember that day like it was today with the same nearly record-breaking temperatures of 85 degrees, then and now. My husband, Tom picked me up from work, and we drove to the neurology appointment. I was anxious, secretly fearing the verdict of Parkinson’s. Tom returned to work after the appointment, and I decided to walk the two miles home alone with my thoughts and worries.  The ground squirrels chirped as I walked past the undeveloped land. I arrived home with a trial of the Sinemet, the “gold standard” in hand. As instructed by the neurologist, I took this pill and was told to observe any changes in my Parkinson’s symptoms. Within a half-hour, the tremor in my left hand had stopped. I picked up my accordion and miraculously played a tune as both hands worked perfectly, just like my pre-Parkinson’s days.

Our lives were forever changed on May 8, 1996. It forced us to celebrate the present and cherish our victories. It taught us about the fragility of life. We learned to stop taking each other and our health for granted.

The challenge is to carry these lessons learned throughout the year, not just on Mother’s Day by remembering and behaving as though today is a gift.

To read about the neurology appointment when I was diagnosed with Parkinson’s, check outThe Answer at http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html

To read about Mom and Lewy Body Dementia, check out http://katekelsall.typepad.com/my_weblog/lewy_body_dementia/

 

 

 

A Definitive Diagnosis

Arriving home from the Bionic Brigade meeting (AKA Denver’s DBS support group), I had three emails with breaking news for the Parkinson’s community: the imaging technique, DaTscan.  I’ve encountered so many folks who’ve been bounced from doctor to doctor for years before being diagnosed with Parkinson’s Disease. Finally, an objective test has been developed, which was approved by the FDA today.

The following is from the Michael J. Fox Foundation at: http://www.michaeljfox.org/newsEvents_parkinsonsInTheNews_article.cfm?ID=692January 14, 2011

Michael J. Fox Foundation Applauds FDA Approval of DaTscan, Heralds Benefits for Parkinson’s Disease Drug Development and Patient Care

Today’s FDA approval of DaTscan, an imaging technique that captures detailed images of the living brain, including areas affected by Parkinson’s disease, stands to benefit both drug development and patient care for Parkinson’s. DaTscan is the first FDA-approved diagnostic imaging agent to aid in the assessment of degenerative movement disorders such as Parkinson’s disease. In keeping with The Michael J. Fox Foundation’s commitment to mobilize new technologies quickly in its urgent pursuit of a cure, DaTscan is already in use at 14 U.S. medical centers as part of the Parkinson’s Progression Markers Initiative (PPMI), the Foundation’s landmark clinical study seeking biomarkers of Parkinson’s disease.

“For the first time, an objective test can help confirm a clinical diagnosis of Parkinson’s disease,” said Katie Hood, CEO of The Michael J. Fox Foundation for Parkinson’s Research. “DaTscan represents a major step forward in enabling timely initiation of appropriate treatment and improved disease management, which contribute to greater quality of life and better long-term outcomes.”

Parkinson’s disease is diagnosed through clinical examinations, but especially early in disease this may be inconclusive and can result in misdiagnosis. DaTscan offers an objective tool to help with early and accurate detection of PD.

“Until now, it has been impossible to confirm that patients enrolling in clinical studies of Parkinson’s disease actually had the disease,” said Todd Sherer, PhD, Chief Program Officer, The Michael J. Fox Foundation. “Having more homogeneous patient populations in clinical trials will contribute to clearer trial outcomes and help speed progress toward improved treatments and a cure.”

“Like many Parkinson’s clinical studies, PPMI requires the participation of PD patients at the earliest stages of symptoms when diagnosis may still be uncertain,” said Ken Marek, MD, principal investigator of PPMI. “DaTscan is critical to ensuring the accuracy of diagnosis of both Parkinson’s patients and control participants entering PPMI and is therefore crucial to the study’s success.”

GE Healthcare, manufacturer of the imaging agent used in DaTscan, is one of seven industry partners supporting PPMI. GE is providing the DaTscan imaging agent at no cost to PPMI clinical sites in the United States and Europe.

DaTscan has been approved in Europe for over 10 years. More than 300,000 people have undergone DaTscan imaging internationally, and the procedure has not posed significant safety issues. 

 

More about that Parkinson's Mask

Behind the Mask of Parkinson’s

Researchers explore the communications hurdles faced by those with the disease and how they can be overcome.

By Robert Bochnak

January 6, 2010 Tufts Journal - The man in the video sits alone, speaking about a wedding he recently attended. On the surface, there’s nothing unusual about the conversation, but as the tape goes on, a curious flatness in his voice and manner are evident. Linda Tickle-Degnen, professor and chair of occupational therapy in the Graduate School of Arts and Sciences, lets the video run for a few minutes before she begins making observations.

She starts with the man’s lower body, noting that he hasn’t moved or otherwise repositioned himself since the interview began. Next, she calls attention to his left hand, which has been trembling slightly. She ends with his face, but no explanation is necessary: he’s remained almost expressionless.

To the untrained eye, the man appears disinterested, even bored. But to Tickle-Degnen, it’s clear that the subject, a Parkinson’s disease patient, is exhibiting “facial masking,” a symptom in which facial muscles become immobilized, leaving patients with blank expressions.

“The face is the primary way we communicate with other people,” says Tickle-Degnen, who has been researching nonverbal and verbal communication among people with Parkinson’s and other diseases for the past 20 years. “We tend to believe the actions of a person more than their words. So a person with Parkinson’s disease may be saying that they are really enjoying life, but may not be believed.”

Work being done at the Tufts Health Quality of Life Lab, which Tickle-Degnen directs, could be instrumental in helping people with Parkinson’s express themselves better and be understood more clearly. Right now, the research is focused on improving communication in an area where many such patients have important relationships—the health-care system.

“Practitioner-patient interactions are social relationships,” says Tickle-Degnen. “If a neurologist, speech therapist or occupational therapist gets the feeling that the person they’re working with is disinterested or depressed, then this relationship can be affected.” Tickle-Degnen notes that even experts sometimes fail to ask patients with Parkinson’s about their feelings, because facial masking hides depression, deception, hostility and apathy.

“If there were a way that we could train practitioners to better detect how positive or negative a person was feeling, we could help strengthen these relationships,” Tickle-Degnen says.

Anatomy of a Smile

There are at least 43 muscles in the human face. Working in concert with other parts of the body, these muscles help people to smile, frown, grimace and express subtle feelings. The key to these movements can be found in the neurotransmitter dopamine, which helps regulate how people produce facial expressions, as well as walk, run, perform hand gestures and carry out other movements in a coordinated way. But when dopamine-producing cells in the brain are damaged, the result can be an inability to control motor functions. This loss of motor control is a key feature of Parkinson’s disease, which affects some 1.5 million Americans and is the second most common neurodegenerative disease, after Alzheimer’s.

Parkinson’s symptoms include tremors, limb stiffness and difficulty moving and maintaining balance. If you add the vocal challenges of Parkinson’s to the mix—some, like the man in Professor Tickle-Degnen’s video, have difficulty modulating the tone of their voices—it would seem that the obstacles to effective communication with the outside world are insurmountable. But Tickle-Degnen is optimistic.

While emotions may not be visible on the faces of many people with Parkinson’s, it is possible to find out what they are feeling if you focus on what she calls “reliable cues,” the ones that don’t change even with facial paralysis.

Tickle-Degnen and her team of researchers have conducted and videotaped 500 interviews with Parkinson’s patients as part of their research. A typical interview consists of a series of positive (“what do you enjoy doing?”) and negative (“describe a frustrating event that occurred last week”) response questions. Subjects are then rated using a coding system Tickle-Degnen developed, called the Interpersonal Communication Rating Protocol. Using it, coders look at, among other things, the frequency with which subjects express nonverbal cues.

“For all the interviews, we analyze facial behavior, body movement and voice, and we also do text analysis,” says Tickle-Degnen. “I ask them about their feelings: if they are happy, unhappy and so on. We’re looking for particular cues.”

Beyond feeling and mood, personality is also expressed through the body. “People who are very sociable and extroverted tend to use large motions with their hands and tend to be very facially expressive, meaning that their faces are showing a lot of motion,” says Tickle-Degnen. Yes, motion, she says: their faces are moving. “And when they tend to be more introverted or shy, they tend to move less in their whole body. Their body is a little bit more quiet, and their facial expression is quieter.”

Training to Read Parkinson’s Patients

Although the research is still being collated, some critical findings have emerged. One is that when patients are asked positive questions, their facial masking is less intense, says Tickle-Degnen.

“This is really important for people who work with Parkinson’s patients, since many tend to do what is called a ‘problem-oriented interview.’ They ask, ‘What problems are you here to talk to me about today?’ Typically, nobody asks people with Parkinson’s about positive things, because there’s not much positive emotion on their faces,” she says.

The next step for the researchers is to train health-care practitioners how to interpret their patients’ nonverbal cues and help them focus more on what the patients are actually saying—a practice that goes against the way people intuitively read one another, which is visual.

“Perceptions of sociability are biased, based on the stiffness and rigidity that can result from Parkinson’s,” says Heather Gray, a postdoctoral fellow in the Health Quality of Life Lab, whose research involves training Tufts graduate and undergraduate students to recognize certain cues in people with Parkinson’s.

Looking for Cues

Once the coding process for the interviews is complete, short clips of them are shown to Boston-area doctors and therapists, whose own responses are then studied and analyzed.

“We ask the practitioners to tell us how happy, depressed or cognitively intact they think the person is. We also ask them to tell us how sociable they think the person is and what mentally challenging activities he or she might be interested in,” says Tickle-Degnen, whose research has been supported by the NIH’s National Institute of Neurological Disorders and Stroke and National Institute on Aging.

“These are not judgments about how much smiling the person is doing, but more social level or diagnostic judgments,” she says. This type of information is critical, since judgments like these play key roles in treatment decisions.

Although Tickle-Degnen’s research takes place primarily at the Tufts lab and in Boston-area hospitals, the scale of the study is global. She is also studying how practitioners from Taiwan perceive patients with Parkinson’s, since cultural norms affect people’s perception of facial masking. Tickle-Degnen says their findings show practitioners may “think they’re being objective in their diagnoses, but that they are being driven by cultural norms in determining depression or dementia or lack of it.”

She’s also doing research that will help people with Parkinson’s deal with their condition. In collaboration with neuron-rehabilitation and movement disorder clinics at Boston University, she has conducted a randomized control trial that studied three groups of Parkinson’s patients: one that was given medication only and two that were given medication and different intensities of “self-management rehabilitation.” This included facial exercises that helped patients retain their facial expressivity to some extent.

“The primary thing we’ve measured so far is quality of life,” says Tickle-Degnen, who has advanced degrees in both occupational therapy and psychology. Those people who received rehabilitation reported that their quality of life was greater, in terms of their ability to communicate with others and not be misunderstood, and to move around the community to perform their daily life activities.

She believes the best step in shrinking the communication divide between practitioners and those with Parkinson’s is sharing what she and her researchers have discovered. But she concedes that getting the word out is just the beginning. She’s published widely and been quoted in national media outlets such as National Public Radio and the Boston Globe.

“It’s wonderful to have people read the articles we have published,” she says. “It’s another thing for people to actually use what we have found. I see it as a challenge, to get out there and help people understand why this work is so important for people with Parkinson’s.”

Related Articles:

http://katekelsall.typepad.com/my_weblog/2009/08/the-misunderstood-mask-of-parkinsons.html

Conquering Constipation

 

Constipation is a topic that we are embarrassed to talk about. We are likely to suffer from it if we have Parkinson’s Disease (PD). In fact, it is sometimes one of the earliest signs of PD as indicated in the following study: http://www.nlm.nih.gov/medlineplus/news/fullstory_92521.html

I am not afraid to tackle this topic and have done so in a previous article, Getting the Poop on Parkinson’s at: http://katekelsall.typepad.com/my_weblog/2008/01/getting-the-poo.html

When I asked Kathrynne Holden, an expert on PD and food, nutrition and constipation, about the safety of an over-the-counter laxative called MiraLAX^® she responded as follows:

“Although it’s best to control constipation with fiber, fluids, and exercise, sometimes that’s not possible. If not, then it’s better to use MiraLAX^® than to risk bowel impaction.

MiraLAX^® was developed for constipation due to slowed peristalsis of the colon, and is generally the best choice for those with PD.

I would still choose high-fiber foods and be certain to take in plenty of fluids daily. Also, as much exercise as is possible will help to stimulate peristalsis. Here is a recipe used in many hospitals which has been helpful for quite a number of folks with PD:

Prune Juice Cocktail for Constipation

For people with frequent constipation, a safe and effective remedy is the "prune juice cocktail," a preparation used in many hospitals.

½ cup unsweetened applesauce
4 tablespoons wheat bran
6 ounces prune juice

Mix well, and store in refrigerator. Take a tablespoonful a day at first, gradually adding more if needed, until you find the amount that works well for you. The bran helps keep the stool bulky and soft, the prune juice contains a natural laxative, and the applesauce gives a palatable taste and texture. Aim for 25 - 40 grams of fiber in the daily diet, and drink 6-8 glasses of fluid daily. It may be helpful to also have a serving of 4-6 stewed prunes 2-4 times per week, for added fiber and additional
natural laxative.

This recipe makes about 10 fluid ounces total. The nutrients for the entire recipe are as follows:
209 calories
6 grams fat
3 grams protein
54 grams carbohydrates
10 grams fiber
22 grams total sugars

The nutrients per serving will depend upon how much is taken at a time. One ounce (about two tablespoons), will be about:20 calories, 5 grams carbohydrate, 1 gram fiber, and 2 grams total sugars.”

Kathrynne Holden, MS

For a Parkinson Tip of the Day and Kathrynne Holden’s website, visit: http://www.nutritionucanlivewith.com/

e

The S Symptoms of PD

I was caught off-guard when a 70 year old newly diagnosed man with Parkinson's Disease (PD) asked questions about early symptoms. I frequently get questions from folks who were diagnosed when they were in their thirties or forties (young-onset persons living with PD --YOPD) who are currently in the advanced  stages of PD. Whether young or old onset or early or advanced stage of PD, people have concerns and fears about living and dying with PD.

Getting back to the basics, the four primary symptoms of PD (I call them the "S Symptoms") include:

Shakiness--tremor

Slowness--also called bradykinesia

Stiffness--rigidity

Steadiness--balance and gait problems

You don't have to have all four symptoms to be diagnosed with PD. In fact, about 30% of those with PD  never develop a tremor. There are a host of other symptoms beyond these four basic ones.

Here's the link to the story that I wrote about on my PD diagnosis 13 years ago in 1996: http://katekelsall.typepad.com/my_weblog/2006/11/ten_years_ago.html

The Misunderstood Mask of Parkinson's

I overheard my friend say “she still has that Parkinson’s stare” when describing me on the phone to her sister. My feelings were hurt, particularly when I’ve made progress in managing the motor symptoms of Parkinson’s.

No matter how hard I try to smile and look pleasant, my expressionless Parkinson’s mask persists. Sure I can smile when someone is taking my picture, but it’s too much multi-tasking to remember to smile all day.

My dead-pan Parkinson’s face and stare are frequently misinterpreted. I have been accused of being angry when happy, sad when gleeful and bored when passionate. People think I’m in chronic bad mood with “that frown on your face.”

Normal people just don’t get it. But Peter Dunlap-Shohl does get it. A cartoonist with Parkinson’s, Peter’s blog, Off and On, describes living with Parkinson’s Disease in Anchorage, Alaska. Peter generously granted me permission to post the following article and cartoon from his blog. You can enjoy more of his postings at: http://offandonakpdrag.blogspot.com

The Mask

Article and Cartoon by Peter Dunlap-Shohl, Copyright © 2008

Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.

With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.

Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.

Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.

The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.

Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)

This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(

Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|

To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.

Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.

The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|

 

Related Story:

The Frozen Mask of Parkinson's at:

http://katekelsall.typepad.com/my_weblog/2007/08/the-frozen-mask.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

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.

Is It Parkinson's Disease or Essential Tremor?

I attended a Parkinson's meeting when a member of the audience with a shaky head and quivering voice like Katharine Hepburn's asked a question as to why her Parkinson's medications weren't working. I've wondered about the possibility of an incorrect diagnosis.

There are numerous tremor disorders, but the two most common ones are Parkinson’s Disease (PD) and Essential Tremor (ET). It is often difficult to distinguish between the tremor of PD and ET. To further complicate matters, around 30% of the patients with Parkinson’s don’t have a tremor.

If you experience an undiagnosed tremor or are concerned that you might be misdiagnosed, seek out the opinion of a Movement Disorder Specialist for the correct diagnosis and treatment.

The following table summarizes some of the differences between the tremor of PD and ET:

	Parkinson’s Disease (PD)	Essential Tremor (ET)
Symptoms	Those with Parkinson’s will exhibit SOME of the following symptoms: Tremor Rigidity and stiffness of muscles (e.g., stooped posture) Slowness of movement Poor balance and tendency to fall Shuffle (walk in small steps) Numerous non-motor symptoms	Tremor is the only symptom
When Tremors Occur	Resting tremor (when hands are at sides or resting in lap)	Activity tremor (when hands are in use)
Parts of Body Affected	Arms and hands are most prominent Usually NOT the head or voice	Hands Head (e.g., yes-yes or no-no tremors) Voice (causing a shaking or quivering sound)
Responsive to L-Dopa (Sinemet)	Usually yes	No

For further information:

Mayo Clinic.com at:  http://www.mayoclinic.com/health/essential-tremor/DS00367/DSECTION=symptoms

What Difference Does It Make: Apathy and Parkinson's

I am happy to report that apathy is NOT one of the Parkinson’s Disease (PD) symptoms that has hit me, at least for now (but one never knows if apathy might be lurking around the corner). In fact, I may have the opposite problem of caring too much, but that’s another story.

Features of Apathy

Hubert H. Fernandez, MD from the National Parkinson Foundation’s Center of Excellence at the University of Florida in Gainesville, discussed apathy at the Colorado Neurological Institute’s program on January 24, 2009.

Apathy is defined as a dulled emotional tone associated with detachment or indifference. The apathetic patient’s typical response when asked a question such as what he wants to do or eat is “I don’t care.”

It is normal to have specific disinterests in life, such as not caring about sports, money, or politics. However, with apathy, the patient loses interest in all aspects of life, including areas of former interest. An apathetic patient is typically a couch potato.

Joseph H. Friedman, MD (a former mentor to Dr. Fernandez) in his book, Making the Connection between Brain and Behavior, states that apathy encompasses a behavioral pattern of:

• Loss of interest in events
• Reduced spontaneous interaction with people and pets
• Decreased concern or seeming indifference to friends and family
• Muted emotional tone
• Loss of interest in hobbies
• Loss of enjoyment
• Loss of distress at hearing bad news
• Loss of motivation

Apathy is Different from Depression

Dr. Friedman described some of the similarities and differences between depression and apathy.

Depressed and apathetic patients frequently share these similarities:

• Anhedonia (absence of enjoyment)
• Loss of motivation
• Lack of interest

Depressed patients often have the following symptoms while apathetic patients rarely experience these symptoms:

• Sadness
• Irritability
• Reduced effort
• Sleep disturbances
• Anxiety

It is also possible to have the dual diagnosis of depression and apathy.

How Apathy Affects Caregivers and Family

Dr. Fernandez indicated that depression tends to drive the patient crazy, whereas apathy can drive the patient’s family crazy. Apathy becomes more of a problem for the caregivers, family and friends than for the PD patient.

Apathetic patients participate less in activities that help them function. This results in a greater burden on the caregiver which requires more understanding, patience and effort. A less responsive patient provides little satisfaction for the caregiver.

How Apathy Affects the PD Patient

Both physicians agreed that the apathetic patient doesn’t care that he doesn’t care. The “I don’t care” attitude provides a protection from the grief and loss suffered by the PD patient. It might be preferable for the apathetic patient to not care versus feeling frustrated and disgusted with one’s loss of functioning. Not caring conserves energy that the apathetic patient might not have to expend.

Treatment of Apathy

Although there is treatment for depression, there is currently no treatment for apathy. Dr. Fernandez stated that research is being conducted using pet therapy to help PD patients with apathy take some interest in life. Wouldn’t it be great if dogs could break the behavioral resistance and emotional barriers of apathy and allow PD patients to express some zest for life?

Resources:

Making the Connection between Brain and Behavior by Joseph H. Friedman, MD at: http://www.joseph-friedman.com/

Hubert H. Fernandez, MD at Ask the Doctor, National Parkinson Foundation at: http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=255&srcid=216

We Don't Get Out of This World Alive

We fear that our Mom who suffers from Lewy Body Dementia (LBD) will either choke to death or starve to death.

Mom was officially diagnosed with LBD three years ago when she exhibited signs of Alzheimer’s, Parkinson’s, hallucinations and delusions. Throughout this period, she has been hospitalized a couple of times, but primarily she’s remained in her own home with round the clock home health care.

Mom is now in a nursing home and has eaten and drank very little in the past two weeks. When she is fed or provided liquid, she frequently chokes. Mom has the swallowing problems (dysphagia) so typical of Parkinson’s patients. Aspiration pneumonia, a leading cause of death with Parkinson’s patients, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink.

Approaching the end of her life, Mom has experienced a decrease in appetite and thirst, and wants little or no food or fluid. It’s her body’s way of preparing for the final shutdown: death.

It’s a predicament – death by choking or by death by starvation. My brothers, sisters and I have difficulty accepting that there’s nothing more we can do, and that it’s beyond our control. No matter how hard we try, we don’t get out of this world alive.

Related Article:

Pitt Researchers Identify an Underlying Cause of Pneumonia Common in Parkinson’s Disease Patients at: http://www.medicalnewstoday.com/articles/121915.php

Exploding the Myth that Parkinson's Is Only a Movement Disorder

Most people are familiar with the motor symptoms of Parkinson’s Disease (PD) such as too much movement (tremor), slowness of movement (bradykinesia), stiffness of movement, or no movement (akinesia) such as in freezing.

 

However, non-motor symptoms related to PD are often not diagnosed and treated.  These include sleep difficulties, bladder and bowel problems, saliva-control and drooling, depression, anxiety, and cognition and memory problems.

 

In fact, the International PD Non-Motor Group, a multidisciplinary group of PD experts, has identified 30 possible non-motor symptoms in the PD Non-Motor Symptoms Questionnaire. You can locate this questionnaire at their website: 

http://www.pdnmg.com/tools/nms-quest.pdf

 

These PD non-motor symptoms are often not picked-up by neurologists. Many of us with PD don’t realize that they are related to the condition.

 

I am relieved that this questionnaire has been developed to help with the gap in understanding.  In fact, I’m going to complete it and bring it to my next neurology appointment.

 

Related Resource:

The following is an excellent webcast on the non-motor symptoms of PD:

Non-Motor Symptoms of Parkinson's Disease - Archived Webcast

The non-motor symptoms of Parkinson's Disease webcast features a presentation by Dr. Mandar Jog, Associate Professor at the Clinical Neurological Sciences, London Health Sciences Centre, London, Ontario, Canada.

http://events.onlinebroadcasting.com/parkinsons/062006/index.php

Are You Worried You Might Have Parkinnson's?

When I was volunteering at a local health fair a couple of years ago, people seemed reluctant to approach the booth with information about Parkinson's (the same way that they avoided the booth about alcoholism and drug addiction). No one wants to consider that he, she or a loved one might have a chronic, progressive, incurable disease like Parkinson's. However, I discovered the following questionnaire which helps educate people about Parkinson's in a non-threatening way.

If you shake or tremor and you want to learn whether you have Parkinson’s Disease and not Essential Tremor, please answer the following questions. If you don’t shake or tremor but think you may have Parkinson’s Disease, you may also answer this questionnaire. Note - 30% of Parkinson patients do not shake or tremor, or rarely shake and tremor. If you don’t shake or tremor but you have a relative who has Parkinson’s Disease, you may also wish to complete this questionnaire.

Questions:

1. Do you have trouble arising from a chair? О Yes О No

2. Has your handwriting become smaller? О Yes О No

3. Do people say your voice has become softer? О Yes О No

4. Is your balance poor? О Yes О No

5. Do your feet ever seem to get stuck to the floor? О Yes О No

6. Do people say your face always seems sad? О Yes О No

7. Do your hands or legs shake or tremor? О Yes О No

8. Do you have difficulty buttoning buttons? О Yes О No

9. Do you shuffle your feet when you walk? О Yes О No

10. Do you take tiny steps when you walk? О Yes О No

11. Has anyone asked if you have Parkinson’s Disease? О Yes О No

12. Have you ever taken L-dopa, levodopa, Sinemet or Atamet? О Yes О No

Scoring:

Add up all of your “Yes” answers.

1 yes = 8% 7 yes = 58%
2 yes = 16% 8 yes = 66%
3 yes = 25% 9 yes = 75%
4 yes = 33% 10 yes = 83%
5 yes = 41% 11 yes = 91%
6 yes = 50% 12 yes = 100%

Score: Interpretation:

0 – 50% Low possibility of Parkinson’s Disease

51-75% Moderate possibility of Parkinson’s Disease

76-100% High possibility of Parkinson’s Disease

Without seeing you and examining you, it cannot be determined whether your shaking or tremor could be related to Essential Tremor or Parkinson’s Disease. This can only be determined by your physician. You must discuss the symptoms that you are experiencing with your physician.

Parkinson's Disease - Early Signs Checklist

My posts on the early warning signs of Parkinson's and end-stage Parkinson's continue to be the most popular among my readers. People want to know when Parkinson's begins and when it will end.

Mike from Florida found my list helpful and expanded upon it to develop a more comprehensive list. Needless to say, no two people with Parkinson's are alike, and neither will develop the same symptoms nor exhibit all of these symptoms. This checklist is a general guideline for personal use. Contact your doctor for medical advice, diagnosis and treatment.

Checklist Compiled by Mike from Florida

( ) A tremor when limb is relaxed (about 25% of patients, however, will not have a tremor)

( ) Aching muscles

( ) Anxiety

( ) Change in facial expression (staring, Iack of blinking)

( ) Confusion

( ) Constipation

( ) Depression

( ) Difficulty making decisions

( ) Difficulty standing up (rising from seated position)

( ) Difficulty swallowing (not swallowing food, but just saliva)

( ) Dizziness

( ) Drooling

( ) Excessive daytime sleepiness

( ) Failure to swing one arm when walking

( ) Fatigue

( ) Flexion (stooped) posture

( ) "Frozen" painful shoulder

( ) Joint stiffness and pain

( ) Limping or dragging of one leg

( ) Loss of balance

( ) Loss of sense of smell

( ) Micrographia (small handwriting), and difficulty beginning handwriting

( ) Muscle pain (not caused from exercise), primarily in the thighs

( ) Numbness, tingling, achiness or discomfort of the neck or limbs

( ) Random sharp pain in joints

( ) Short-term memory loss

( ) Sleep disturbance

( ) Softness of the voice

( ) Strange sensations in hands

( ) Subjective sensation of internal trembling

( ) Symptoms on one side of the body

My Dog’s Nose Knows

I wish I had my dog’s nose, even for 10 minutes.

When we go for a walk, Oreo, our beloved English Springer Spaniel, a hunting and bird dog, experiences the world nose-first. She is likely to smell chocolate leftover from Halloween buried in the autumn leaves. Walk a little further and she sniffs urine on the tree where a male dog marked his territory. Then Oreo whiffs the sweet and sour scent of crabapples along our path. Oreo really gets excited when she picks up the musty smell emanating from the sewer where the den of raccoons spent the night.

I, on the other hand, smell nothing.

The loss of smell (hyposmia) is a hallmark symptom of many neurological diseases, including Parkinson’s Disease (PD). Smell loss is a more common symptom of PD than tremor. Unfortunately, I have both symptoms. One of the most common sensory problems of PD patients is the inability to detect and discriminate odors.

I can’t remember when my sniffer became “not up to snuff.” It most likely began when my PD journey started more than 11 years ago.

Nicolaas Bohnen, MD, Associate Professor of Radiology and Neurology at the University of Michigan in Ann Arbor, and his team sought to determine whether a selective pattern of smell deficit might exist in patients with PD. They used the University of Pennsylvania Smell Identification Test (UPSIT), a self-administered battery of 40 scratch-and-sniff odors ranging from turpentine to roses to pizza.

The investigators found that patients with PD did worse compared with controls on identifying eight odors, listed in order of decreasing odor identification: licorice, coconut, banana, dill pickle, paint thinner, turpentine, cherry, and soap. PD patients were better able to distinguish only one smell: lemon.

The impairment of the sense of smell is so common in Parkinson's patients it is has been suggested as a possible diagnostic tool. Dr. Bohnen also noted that smell testing may be more reliable than motor testing, especially for patients in the earliest stages of PD. He also suggests that a combination of smell and cognitive testing is better at predicting a dopamine deficit than are motor tests.

While I remain envious of my dog’s keen ability to smell, with PD I need to keep myself safe without a sense of smell. I hope that Oreo’s nose will alert me if she smells something dangerous because her nose knows.

The Less Visible Symptoms of Parkinson’s

When people think of Parkinson’s Disease (PD), they usually picture the physical manifestations of this movement disorder: tremor, shuffling steps, stooped posture, stiff and rigid movements, poor balance and dyskinesia.

When Joe, the author of the blog, Day by Day Adventures of the PD Warrior, wrote about the less visible symptoms of PD, the slow-moving wheels in my brain began churning.

This is a topic that I loathe to discuss: the loss of cognitive functioning due to PD.

I and others living with PD take pride in our intelligence and education. Most of the people I know with PD have at least a Master’s degree. A doctor from China said that all of his PD patients in China were nuclear physicists and that I was in good company. I didn’t feel reassured.

Margery H. Silver, Ed.D., is a neuropsychologist, and has a husband with PD. She wrote a terrific article entitled Cognitive Changes in Parkinson's. It is informative, practical and succinct including strategies for circumventing or managing these cognitive changes. Dr. Silver is also the co-author of Living to 100: Lessons in Living to your Maximum Potential at Any Age.

Dr. Silver categories the cognitive changes from PD as follows:
Bradyphrenia (slow thinking)
Attention and concentration
Executive functions
Memory
Visual-spatial abilities

Some of these cognitive changes from PD have impacted my behavior as follows:

Bradyphrenia (Slow Thinking)
My thinking is sometimes slow in answering a question, writing this blog, doing word jumbles, crossword puzzles, and playing Scrabble. I will eventually come up with an answer or solution, but it may take awhile. This is particularly frustrating because I previously prided myself on being an instant, quick to respond and decisive person.

Attention and Concentration
My ability to concentrate and to ignore distractions has decreased with PD. I can no longer simultaneously read and listen to music (instrumentals seem easier but songs with words are impossible). When I was working, it was difficult to deal with the constant interruptions by people who arrived in person or called by phone.

Executive Functions
I sometimes have difficulty with executive functions. They include my ability to initiate a task or activity on my own, to plan (for instance, what I will do during the day), to organize tasks and materials, to sequence (arrange items or things to do in order), to prioritize and to shift between activities and conversational subjects.

Memory
In Parkinson's disease, it is usually the retrieval of information that is impaired. I can usually get memories into storage (if I’ve paid attention), but I sometimes have difficulty recalling them. Occasionally, I have difficulty recalling a person’s name or grope for the correct word in conversation. Fortunately, memory has always been my strong suit and continues to serve me well.

Visual-Spatial Abilities
This term refers not to vision per se, but to how the brain interprets a visual image. I sometimes have difficulty judging distances and relationships between objects. In the past, I teased seniors who parked on sidewalks, but now I find myself parking on sidewalks, misjudging where the curb ends and the sidewalk begins.

Whew, I did it! I wrote about a topic that I was afraid to discuss. Thanks for listening and feel free to share your experiences about how PD has affected your cognitive abilities.

The Frozen Mask of Parkinson’s

I’ve been notified of our 40th high school reunion (yes, 40th) from Bishop Hogan High School in Kansas City, Missouri. All of a sudden, I feel old and nervous about reuniting with classmates.

My face has aged with Parkinson’s Disease (PD). Sometimes when I see my reflection in the mirror, I can’t recognize the person staring back at me. I have that blank PD facial mask that doesn’t truly convey my thoughts and feelings. My outside often doesn’t match my inside.

My face represents my personal identity. It is my way of communicating and expressing emotions. People have said that I look sad or angry when I feel quite the opposite.

A recent Tufts University study found that individuals whose emotions were masked by PD were perceived as less intelligent, socially savvy and trustworthy than other patients.

Before PD, people often commented on my beautiful smile. Now I have to rehearse smiling (not grinning or smirking) with my rigid facial muscles. I have a couple of months to unfreeze that PD mask.

I need to go and practice.

Early Warning Signs of Parkinson's Disease

When a reader of my blog asked about the early warning signs of Parkinson’s Disease (PD), I was caught off guard. I know what full-blown PD looks like, but I’d forgotten what PD might look like before it may even be diagnosed. With a little research, here's a list of the early signs and symptoms of PD:

Change in facial expression (staring, lack of blinking)

Failure to swing one arm when walking

Flexion (stooped) posture

"Frozen" painful shoulder

Limping or dragging of one leg

Numbness, tingling, achiness or discomfort of the neck or limbs

Softness of the voice

Subjective sensation of internal trembling

A tremor when limb is relaxed (about 25% of patients, however, will not have a tremor)

Symptoms on one side of the body

Loss of sense of smell

Constipation

Depression

Anxiety

Toastmasters Doctors

Less than a week after my diagnosis of Parkinson’s Disease (PD) in May 1996, I was scheduled to make a presentation at my local Toastmasters meeting. Toastmasters International is an organization that provides a program in oral communication and leadership training.

I arrived early and paced back and forth from the meeting room to the bathroom. I felt as though I was going to throw up. I wasn’t sure why I was so nervous – whether it was public speaking in general or the topic of my speech in particular.

The feedback on previous speeches was always the same: “You didn’t seem nervous except for the tremor in your left hand.” I dismissed the comment, believing that the tremor was caused by public speaking anxiety. Another member’s feedback was: “Your left arm and hand just seemed to hang there and served no useful purpose,” while another participant commented, “You didn’t seem to show any facial expression.”

I was slated to speak first. There was still time to chicken out, but I was no chicken. My name was called. I sauntered to the front of the room. I looked at the audience and saw the eyes of twenty men and no women. Where were the women? I panicked.

“Good evening, fellow Toastmasters,” I proceeded, and there was no turning back. I described my symptoms of PD and thanked the Toastmasters for diagnosing my PD with their previous feedback. The audience was mesmerized. The timekeeper flicked on the red light indicating my time was almost up. My message needed to be heard, so I continued beyond my allotted time. I ended the speech. Twenty men stood and clapped wildly. I returned to my place, put my head on the table and sobbed inconsolably.

From then on, I affectionately referred to this group as the Toastmasters Doctors.

The Answer

Now that I've become more outspoken about having Parkinson's Disease, people have asked a lot of questions, particularly related to my diagnosis. So here's my story:

I squeezed into the tiny exam room. Although I was only 46 years old, I looked like a senior on a cruise, dressed in my green and white striped polyester pantsuit, fresh off the rack from J.C. Penney’s.

I undressed and climbed on the table with my sweaty pre-menopausal body. The 85-degree temperature probably broke a record. I didn’t know if it is the heat or the humidity, but it was certainly hot.

I was oblivious to the sun-shiny day. The mountains in the west were a blur. The birds chirped outside, and I hated them. I wanted to be anywhere else, except in these confined quarters.

Instead, I was at the Neurology Office of Kaiser Permanente in Westminster, Colorado, on May 8, 1996, waiting for the answer as to what ailed me. For nearly six months, my left hand shook. My left arm hung there like a dead animal. I dropped things. People told me I had a blank facial expression. My voice was soft and raspy. Typing on the computer slowed and became punctuated with errors. A typed word such as “home” appeared as “homeeeeeeee” on the computer screen. My fingers grew minds of their own.

Although, I tried not to worry, I secretly hoped this physician would have the answer and prescribe medication that would take care of my medical woes.

When the physician entered the room, I sat up and tried to act alert. She looked more like an attorney than a doctor in her business suit. She was short, slim and appeared to be in her thirties. We both hovered around five feet. Her first name was Mindy, but I knew I wouldn’t be calling her that. I wanted her to be the one with the answer. Dr. Mindy Wiener became my neurologist. I’d had an internist and an OB-GYN, but never a neurologist.

During the prior two months, she administered neurological tests. She had asked me to open and close my hands and tap my feet. She had attempted to push me over from behind. She had requested that I take off my shoes, outstretch my arms, and walk with one foot in front of the other. My body fell hard against the cool tile of the exam room. I failed that test. She scanned my brain with an MRI, zapped my nerves with electrical currents, and then referred me to specialists.

I sat with Dr. Wiener on that hot afternoon as she reviewed my tests and scrutinized the medical reports and X-rays. Her mouth pinched, and brows furrowed.

I distracted myself by looking away at the walls, which were undecorated except for her certificate of residency in neurology from the New England Medical School Hospitals in Boston. The silence was excruciating. When she finally did speak, her words seemed scrambled. I leaned forward and focused to understand.

“I have good news and bad news,” she said. “The good news is that you don’t have a brain tumor, Lou Gehrig’s disease or Wilson’s disease. The bad news is that it appears that you have Parkinson’s Disease.”

Somehow I missed the part about the good news. I didn’t want to have anything to do with any of those dreadful diseases.

Too afraid to ask out loud, I silently questioned: Will I end up in a wheelchair? Will I be able to work until retirement? What about playing in the accordion competition?

I left the land of health and entered into the land of illness, a different country, where I became a permanent resident. I was issued an ID in my wallet that says in big bold letters that I AM NOT INEBRIATED, that I have a medical condition called PARKINSON’S DISEASE, and that it is not contagious.

Dr. Wiener had the answer. It was not the answer that I wanted to hear.

Dancing Around the D and S Words

Yesterday was a beautiful autumn day with summer-like temperatures. The leaves on the aspen trees were turning gold, and the snow-capped mountains rose to the bright blue sky in the west.

Tom and I had previously registered for an afternoon seminar on Parkinson’s Disease (PD), and unfortunately we were stuck inside on this picture postcard day.

The first two speakers were interesting and informative. Although the third speaker had the same traits, he was the new doctor in town who tried to impress us with his knowledge of PD. He discussed every possible symptoms and side effects of PD, PD meds, and PD surgery. This is the list that I came up with that in the wee hours of the morning:

A-Anxiety, autonomic dysfunction, akinesia (loss of physical movement), apathy, anosmia (loss of sense of smell)
B-Bradykinesia, balance problems
C-Cognitive problems, constipation, choking
D-Depression, dementia, dysphagia (swallowing problems), driving difficulties, drooling, dystonia, denial, dyskinesia, delusions, death
E-Emotional lability, eating disorders
F-Fatigue, fidgeting, falling, freezing, finger motor problems, facial mask (hypomimia), foot cramps
G-Gait disturbance, gross motor problems
H-Hallucinations, hypotension (low blood pressure)
I-Impulsive dyscontrol disorders (pathologic gambling, compulsive eating, hypersexuality, compulsive spending), impotence
J-Jaw problems
K-Kinesia disorders (too much or too little movement)
L-Lethargy, loss of libido
M-Memory impairment, motor function abnormalities, micrographia (reduced size of handwriting)
N-Numbness, nausea, nightmares
O-Olfactory dysfunction (decreased ability to smell), on-off fluctuations
P-Psychiatric problems, psychosis, pain, panic attacks, pneumonia, postural instability
Q-Queasiness
R-Restless leg syndrome, REM behavior disorder, rigidity, reduced arm swing
S-Sleep disturbances (including sleep apnea, excessive daytime sleepiness, sudden sleep attacks), sexual dysfunction, sensory disturbances, seborrheic dermatitis (dandruff), sweating excessively, swallowing problems, shuffling, slowness, stooped posture, stiffness, social anxiety
T-Tremor, toe cramping
U-Urinary disturbances (including frequency, urgency, and incontinence)
V-Voice and speech problems (hoarse, monotone, imprecise articulation, slurred speech, low volume or hypophonia, voice tremor), visual problems, vomiting, vivid dreams
W-Weight changes, weakness
X-Xenophobia
Y-Yin, yang, yoga
Z-Zombie

I counted 96 symptoms and side effects that he spewed out in 75 minutes (Okay, I lied, only 91 as I had to make up the 5 symptoms in the X, Y, Z category). I wanted to scream “stop” in the middle of the lecture. It was just too distressing to be reminded of how my life with PD might unravel.

I've been dancing around the D words for quite some time, and now I’m finding that the S words are equally unappealing. Is it any wonder that I have difficulty sleeping with this alphabet soup of PD woes in my head?