Shake, Rattle and Roll

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.

Parkinson’s Disease Questionnaire from the Parkinson Association of the Rockies

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?