Shake, Rattle and Roll

Be Prepared: Tips for Creating Productive Neurology Appointments

Managing your Parkinson’s Disease is a partnership between you and your neurologist. Help make the limited time you have together in appointments productive by being prepared.

Preparing for Your First Appointment

Prepare your health history (previous illnesses, hospitalizations, surgeries, allergies, etc.) and bring it to the visit. You may want to ask your neurologist if there is a form you can complete prior to the visit.

Bring other medical information and test results, such as lab work, x-rays, and MRIs. For radiological studies, ask the office if they prefer copies of the films or if reports are adequate. You may also ask your primary doctor to send records directly to your neurologist's office.

Bring a list of the doctors you want your neurologist to update about your medical condition. Be sure to include their telephone, fax numbers, and addresses.

Bring your insurance card, co-pay, photo ID and referral, if needed.

Ask your care partner to attend the appointment. It’s important to have another set of eyes and ears and someone to listen, take notes, and ask questions. If your care partner is unavailable, ask a family member or friend to accompany you.

Arrive early to allow time for parking, using the restroom, getting to the appropriate building and reception area, checking in and filling out paperwork. If you need your doctor’s signature on any paperwork (such as prescriptions to be refilled, disability forms to be completed, request for handicapped parking, request to be excused from work), it is important to give the paperwork to the nurse or doctor upon arrival at your appointment.

Preparing for Subsequent Appointments

Before the appointment, prepare the following:

List of current prescriptions including names, dosage, and how often and what time you take them. Gather all your medications in a bag to bring to your visit.

List of current supplements including names, dosage, and how often and what time you take them.

List of current symptoms in order of how troublesome they are to you. Use bold type to identify the three most troublesome symptoms.

List of movement symptoms such as walking, falling, freezing, getting out of a chair, moving in bed, etc.

List of nonmovement symptoms such as swallowing, speech, nausea, constipation, urinary frequency and/or urgency, drooling, excessive sweating, dizziness upon standing, swollen ankles, sleep disorders, restless legs, etc.

List of fluctuations in your symptoms including on/off fluctuations such as those related to medication cycle eating, sleeping, and exercise.

List of episodes of dyskinesias (those involuntary movements caused by Parkinson’s medications) and whether they occur at the peak or end of the medication cycle.

List of changes in your mental status such as depression, anxiety, cognition, difficulty in ability to make plans, hallucinations, compulsive or excessive behaviors such as shopping, gambling or sex.

List of observations/information regarding your condition or any changes in your condition.

List of questions regarding your condition, symptoms, treatment, medications, alternative therapies, or new developments you have heard about that may apply to you. List the three important questions first. It is important to prioritize in case there is not enough time to address everything in your appointment.

During the appointment, ask for referrals to the following:

Speech Therapy for help with speech, communication and swallowing problems.

Physical Therapy for help with balance, gait, strength, pain, and flexibility issues.

Occupational Therapy for help with handwriting problems, home modifications, and adaptations to make your activities of daily living easier.

If your neurologist prescribes medication, make sure you fully understand:

What has been prescribed and its potential benefits, possible side effects and what to do if these side effects occur.

If there is an acceptable generic substitution?

Exactly when and how long you are to take your medication(s).

Make sure to double-check that the medications you get from the pharmacy are the same medications that have been prescribed for you.

At the End of the Appointment

Make a follow-up appointment, if necessary.

Find out when your neurologist will get back to you with your test results.

Know what the next steps are in your care.

References:

Shaky Paws Top 10 Recommendations for PWP's by Kirk Hall http://shakypawsgrampa.blogspot.com/2012/05/shaky-paws-top-10-recommendations-for.html

Making the Most Out of Your Visit to the Neurologist: A Check-Up Checklist by Lawrence I. Golbe, MD http://www.pdf.org/en/yy_doctor_checklist

Preparing for Your Neurology Appointments: Helping Your Neurologist to Help You! Prepared by Diane Church, PhD http://www.apdama.org/cmsAdmin/uploads/Preparing-for-Your-Neurology-Appointment.pdf

Tips for Improving Your Verbal Fluency Test Scores

Verbal fluency is the ease with which you can produce words and get the words out of your mouth.

If you are being evaluated as a candidate for DBS, it is likely that you will be tested by a neuropsychologist who will administer a battery of tests, including those that measure your verbal fluency.

One of the most common long-term complications for Parkinson’s patients who have had bilateral DBS-STN is a decline in verbal fluency after DBS.

How can your verbal fluency be measured?

Two of the commonly used verbal fluency tests include the following:

Controlled Oral Word Association Test: You are given a letter of the alphabet and told to generate as many words as possible for a minute that begin with that letter. You are instructed to not just add a different ending, like past tense, in order to generate a new word. You are advised not to repeat any words, so it was important that you remember what you say.

Category Fluency Test: You are asked to name as many different examples of the specified category as they can in a minute. Typical categories include animals, fruits, and vegetables.

Although the most common performance measure is the total number of words generated in one minute, other analyses such as number of repetitions, number and length of clusters of words from the same subcategory, or number of switches to other categories can be carried out.

Do these tests just involve generating lots of words?

Most tests of this sort involve more than just producing lots of words. The tests may also involve some conscious mental processing. One important aspect of verbal fluency is having a large vocabulary of words for you to draw on. In addition to having a large vocabulary, it is important that you are able to search rapidly through your vocabulary, find a word that fits the task, speak it and then repeat this until you run out of time. Some people speak much faster than others, some are quicker than others at searching for the right words and some are better at repeating the same thing over and over again.

How did I improve my verbal fluency test scores?

Controlled Oral Word Association Test: On this test, I was given a letter of the alphabet and told to generate as many words as possible within a minute. For example, if I was given the letter “S,” I would generate words that started with SA followed by the consonants in the alphabet.

Examples of words beginning with SA: saber, sack, sad, safety, sage, sake, sale, same, sane, sap, sassy, sat, save, saw.

Go through the same process for words beginning with the following: SE, SI, SO,SU

Category Fluency Test: On the category fluency test, it is possible to prepare ahead by learning a large number of items in the commonly used categories such as animals, fruits, and vegetables.

For example, if you are given the category of animals, start again with the alphabet. Examples of animal words alphabetically are as follows: ape, buffalo, cat, dog, elephant, etc.

Why does it matter?

It is unclear how a decline in verbal fluency as a result of DBS translates into daily functioning in the real world. A decline in verbal fluency might not directly result in complaints of problems in life. Practicing these verbal fluency exercises and other brain games might even improve your verbal fluency in everyday life.

Please Refrain from Standing on the Furniture

These guys don't see the sign.    

In our hyper-alert state, Valerie and I are keenly aware of the the sign in the waiting room of our neurological evaluation at the National Institute of Health in Bethesda, Maryland on a record-breaking 93 degree day on April 6, 2010.

   

Darn, we fly 1500 miles each way, and we have to refrain from standing on the furniture.  We don't really want to stand, just dance on the furniture, but we refrain. We're being evaluated  at the National Institute of Health, (NIH) not the National Institute of MENTAL Health.

Valerie and I wait in the lobby and stress about the presidents as we prepare for the inevitable question: "Can you list the presidents in reverse chronological order?" We've been practicing for a couple of weeks and frequently forget the Republican presidents. Can anyone with or without Parkinson's really name all the presidents backwards or forwards?

Obama, Little Bush, Clinton, Big Bush, Reagan, Carter, Ford, Nixon, Johnson, Kennedy, Eisenhower, Truman. That's all that I can remember -- up to "Give 'Em Hell Harry" (Truman) from my birthplace in Missouri. Valerie remembers a few more: Roosevelt, Hoover, Coolidge. We both worry that we will appear stupid, despite various advanced degrees earned many lifetimes ago. So we commit to memory as many presidents backwards as possible.

Someone tells me to follow her as she calls me by my legal name, Kathleen, despite protests of "I prefer to be called Kate." Valerie and I wish each other luck. I think that we need more than luck as we are evaluated by most of the members of the Movement Disorder team at NIH.

An evaluator tests my time, place and orientation by asking "Where are you?" I respond with "I am at National Institute of Health in Montgomery County (I cheated by asking the hotel clerk the name of the county) in Bethesda, Maryland on the 5th floor of the Clinical Center, Building 10 (Magnuson) in the Outpatient Department on Tuesday, April 6, 2010 at 8 AM on a warm spring, that feels like summer, day." When I read upside down, I see that the evaluator writes"alert." This is good. I would have written, "alert with OCD tendencies."

I am familiar with many of the neurological tests: chicken dance hands, wave to the queen, walk down the hallway, turn around and walk back.  I remember to swing my arms as I stroll the neurological hallway. I know the drill. While being videotaped, one of the evaluators tries to push me over to determine my balance and comments "You  are strong." I respond with "I've always had excellent balance."

I am also videotaped reading a paragraph from Rainbow passage that is frequently used by speech therapists when they evaluate one's speech and voice.

I am asked to remember five words and recite them later as well as perform a clock drawing task.

I am asked to count backwards by 7 starting from 100 as quickly as possible: 100-93-86-79-72-65-58, etc. No problem -- I can do this.

In order to test my attention and concentration, the examiner reads a string of digits at a rate of one per second, and asks me to repeat it backwards. For example, if she says 8, 4, 2, 3, 9, 7, 5, 4, 1, 0, I must repeat it back as 0, 1, 4, 5, 7, 9, 3, 2, 4, 8. I silently wonder what it has to do with Parkinson's.

One of the evaluators comments that I look stressed. I respond, "I am worried about the presidents." He quips, "Not to worry -- I am going to ask you to list the names of the prime ministers of Britain in reverse chronological order." I wish I could say that I respond with "Brown, Blair, Major, Thatcher" etc.,  but unfortunately this is not the case.

The test that I found particularly difficult is the scratch and smell test. I could not identify ANY of the smells in the test. I can't determine the difference between the smells of peanuts, burning leaves, and gasoline. I guess at all 40 questions of the multiple choice test. I know that my sense of smell is poor, but am shocked to discover that it is non-existent.

Valerie and I manage to complete the evaluation and refrain from standing or dancing on the furniture and avoid being referred to the National Institute of MENTAL Health. Overall, it is a positive experience, and we look forward to receiving a report that we are in perfect health except for Parkinson's Disease.

 

 

 

 

 

Brainy or Brawny?

My biggest fear is being perceived as stupid. I'll take brains over brawn any day.

Like others with Parkinson's Disease who are well-educated and value their intelligence, my stomach churns when I even contemplate taking a neuropsychological exam. What if I'm not as smart as I thought I was?  What if I've already begun the slippery slope toward cognitive decline?

When I'm worried about losing my marbles, I reduce my anxiety by taking neuropsychological practice exams. After all, practice makes perfect, or as close to it as possible for a Parkinson's patient. Two of my favorites found online are:

Mini-Mental State Exam at: http://mhosinc.com/Mini%20Health%20Exam.pdf  There are three versions instead of one version, to prevent the learning effect of someone like me taking it over and over again.

Montreal Cognitive Assessment at: http://www.mocatest.org/

Good luck with your practicing to become the perfect Parkinson's patient.

 

For more of my stories on neurology appointments and  neuropsychological exams, check out: http://katekelsall.typepad.com/my_weblog/parkinsons_neurology_appointmentsneuropsy_exams/

Remember to be APT

Mild Cognitive Impairment can be diagnosed in less than three to five minutes according to an article in MedPage Today.  

A new screening tool, the Mini-Cog, has been developed which focuses on asking patients to remember three words and recite them later as well as a clock drawing task.

Remembering the acronym, “APT” (or being unusually intelligent and able to learn quickly and easily), can prevent you from being diagnosed with Mild Cognitive Impairment.

APT stands for:

  A for Apple

P for Penny

T for Table

Some of the neurologists have finally figured out that patients share test information among themselves and have changed the three words.

Another part of the test involves patients being given a pre-drawn circle and asking them to draw a clock, with the hands set at the time of ten minutes after eleven.

So remember to be APT at your doctor’s exam.

Related Articles:

Three Little Words Helps Quick Diagnosis of Mild Cognitive Impairment at http://www.medpagetoday.com/Geriatrics/AlzheimersDisease/11854

Acing the Mini-Mental Status Exam at http://katekelsall.typepad.com/my_weblog/2007/09/acing-the-mini-.html

Did the Wizard Ever Get Back to You About That Brain?

Can you remember how many houses you own? That’s not a problem for most of us.

I bet Obama and McCain would also have trouble remembering what those of us living with Parkinson’s try to cram into our shrinking brains.

When I read Terri Reinhart’s article, Cramming, about preparing for an upcoming neuropsych test, I chuckled and reminisced about my eight hours of neuropsych tests required as a candidate for deep brain stimulation (DBS) surgery. I knew they didn’t want a DBS candidate who was demented, deficient or depressed, so I did my best not to exhibit these characteristics.

A frequent question in neuropsych tests is counting back by 7 from 100. I easily solved this trick question on my blog post at Acing the Mini-Mental Status Exam (Hint: 100 minus 10 plus 3 = 93, etc.).

If you weren’t a math major in college and have difficulty with these mental calculations, another trick question is often proposed: list the US Presidents in reverse chronological order, from the most recent to the first.

I discovered a memory device that helps me remember the list of the US Presidents in chronological order. It is similar to “every good boy does fine,” used to remember the notes in the five main lines of the Treble Clef in Music, representing E, G, B, D, and F from bottom to top.

Here’s your cheat sheet for remembering the names of the US Presidents in chronological order (by the first letter in each name). You’ll need to create your own mnemonic for remembering the US Presidents in reverse chronological order. It’s trickier – like trying to remember the ABCs backwards.

Now what were the names of the prime ministers of Canada?

United States Presidents

Will a jolly man make a jolly visitor?

Washington

Adams

Jefferson

Madison

Monroe

Adams

Jackson

Van Buren

How truly poor those fine paper boys look?

Harrison

Tyler

Polk

Taylor

Fillmore

Pierce

Buchanan

Lincoln

Just give him gold and cash his check.

Johnson

Grant

Hayes

Garfield

Arthur

Cleveland

Harrison

Cleveland

Mommy rushes to where her children hug relatives.

McKinley

Roosevelt

Taft

Wilson

Harding

Coolidge

Hoover

Roosevelt

Those eleven kids just nag for cranberries repeatedly.

Truman

Eisenhower

Kennedy

Johnson

Nixon

Ford

Carter

Reagan

Buy chocolate bon-bons.

Bush, Sr.

Clinton

Bush, Jr.

Related Articles:

Cramming by Terri Reinhart at: http://studiofoxhoven.squarespace.com/articles/2008/8/17/cramming.html

Acing the Mini-Mental Status Exam at: http://katekelsall.typepad.com/my_weblog/2007/09/acing-the-mini-.html

Imperfect Then, Imperfect Now at: http://katekelsall.typepad.com/my_weblog/2006/10/imperfect_then_.html

Acing the Mini-Mental Status Exam

This morning I wake up thinking about a yellow shoe hanging from a pine tree, and I decide to write this blog.

It is September 12, 2007, and I am at the University of Colorado Medical School in Denver (you'll understand why this date and location is important later). I glance around the small room packed tightly with twenty people, all with various movement disorders. Many of us show wear with signs of living with Parkinson’s Disease for many years, with our shaky limbs and masked faces.

I recognize many of the “formers”: a chairman of a university math department, a director of a university computer science department, an engineer, an attorney, a clinical psychologist and me, a contradiction with a CPA and Master’s degree in Social Work. I’m accustomed to being accused of being a sensitive accountant and teased about being a logical social worker. In our roles as “formers," we previously had occupations and careers that dominated our lives, but now are available on a Wednesday morning, to be interviewed by second year medical students, most as young as our children and grandchildren. The University of Colorado medical students interview volunteers with movement disorders to find out what it is really like to live with Parkinson’s, Essential Tremor or other disorders that affect our mobility.

My name is called, and I am greeted by a medical student, who introduces himself as John. His professor mumbles something when I ask his name, and he clearly does not want me to know or address him by his first name. After all, he is a Doctor.

John and Doctor whisk me away to a room with about a dozen eager 23-year-olds sitting in a semicircle. These medical students introduce themselves by their first names, and their two professors have the same first name of Doctor.

The students ask perceptive questions such as how did I feel when I was first diagnosed with PD, what are my biggest fears about the future, and how does PD affect my husband and family. I have both too little to say and too much to say within that hour. When I tear up, some of the young students are also misty. I secretly ask myself why the neurologists never ask me these kinds of questions. Then I realize that these medical students are currently studying psychiatry not neurology. I wonder if the students would be comfortable asking the same questions if they were currently studying neurology instead of psychiatry.

When the students seem to run out of questions or not get the answers they were hoping from me, John asks questions from the Mini-Mental Status Exam. This exam quickly measures five areas of cognitive function: orientation, registration, attention and calculation, recall and language.

I didn’t tell the young students that I previously endured eight hours of neuropsychological tests to be approved for Deep Brain Stimulation (DBS) surgery. Surgery candidates for DBS are not allowed to be demented, disoriented, depressed or deficient. DBS can sometimes make these characteristics worse (see Imperfect Then, Imperfect Now).

John says “shoe, yellow and pine tree” and asks me to repeat. I repeat “shoe, yellow and pine tree.” I visualize a yellow shoe hanging from a pine tree.

John asks me to count backwards by 7 starting from 100. I chuckle as I tell him that I discovered the trick to solving this puzzle. “Instead of thinking in terms of subtracting by 7, it’s easier if you subtract by 10 and add 3,” I instruct like an elementary school math teacher. For example,

100 minus 10 equals 90 and 90 plus 3 equals 93,
93 minus 10 equals 83 and 83 plus 3 equals 86,
86 minus 10 equals 76 and 76 plus 3 equals 79,
Etc.

John concurs that “You got it,” and Doctor questions why I told the students how to solve this trick question. I can’t picture these bright doctors of the future ever having to answer this question.

John asks about the three words that he mentioned earlier. I respond with “shoe, yellow and pine tree.”

John asks another trick question: “Where are you?” He hears irritation in my voice when I respond with “Ninth Avenue and Colorado Boulevard in Denver, Colorado.” John sheepishly says, “Oh yeah, you said that you worked across the street at the hospital for seven years.”

After the interview is over and I leave, I realize there is so much that I didn’t say.

For those young doctors-to-be who might be reading this blog, this is what I want you to know:

Don’t ever be afraid to be sensitive to your patients. Ask them questions. Get to know them as people with multi-dimensional lives, not just patients with problems.

Really listen to your patients, not only their words, but also the feelings behind their words, the challenges behind their smiles and the fears behind their tears.

And most of all, never give up on your patients. If you lose hope, they will perceive your hopelessness. It is okay not to have a solution to their medical problems, but it is unacceptable to dump them without a referral to someone who may be able to help.

That’s all that I need to say. I feel much better now.

I hope that I aced the Mini-Mental Status Exam, even though I can't get the yellow shoe hanging from the pine tree out of my mind.

Imperfect Then, Imperfect Now

I was anxious when my husband, Tom dropped me off in the office of Kaiser Permanente Neuroscience clinic in Sacramento. It was a 90 plus degree day in April of 2004, hot even by Sacramento standards. The purpose of today's appointment was neuropsychological testing required for Deep Brain Stimulation (DBS) for Parkinson's disease (PD).

I met with a humorless neuropsychology intern. I attempted to get the intern to smile as she administered eight hours of tests. My attempts were in vain.

Surgery candidates for DBS were not allowed to be demented, disoriented, depressed or deficient. Apparently DBS can make any of these characteristics worse. I did my best not to exhibit any of these traits.

I was asked to count backwards by 7 starting from 100, and as quickly as possible: 100-93-86-79-72-65-58, etc. No problem, I thought. I can do this.

In order to test my attention and concentration, the examiner read a string of digits at a rate of one per second, and asked me to repeat it backwards. For example, if she said 8, 4, 2, 3, 9, 7, 5, 4, 1, 0, I must repeat it back as 0, 1, 4, 5, 7, 9, 3, 2, 4, 8. This was more difficult, and I wondered if it had anything to do with PD.

To determine my general intellectual functioning, I was asked the definition of certain words. This was an easy task for me, except for the word “amanuensis,” which meant one who copied manuscripts or took dictation, similar to a secretary. And I fixated on “amanuensis” and when asked about the names of the continents, I remembered all but one, and obsessed on that as well.

When I returned to Denver, the tests results arrived in the mail several weeks later. There was some mention of “mild cognitive impairment.” When I whined to my neurologist in Denver about this label, she tried to reassure me by saying, “They have to say this because in case there is a problem with surgery, they can say that you weren’t perfect before the surgery, and you’re not perfect now.” I wasn't reassured.

Exactly a year later in April of 2005, I returned to Sacramento this time for DBS. Tom and I sat in the same waiting room in Sacramento for the pre-op appointment with Dr. Wheelock, the neurologist on the surgical team. Patients smiled at us when reading our custom made T-shirts with pictures of the straw man from the Wizard of Oz with the caption, "Did the Wizard Ever Get Back To You About That Brain." We hoped to bring a little levity to the neurology waiting room.

After moving into the exam room and waiting for Dr. Wheelock to arrive, Tom and I spotted a plastic model of a brain with multiple parts and a tiny plastic replica of a Montreal Expos baseball helmet on top. Knowing that the Montreal Expos was a defunct team, our curiosity got the best of us. Tom took off the baseball helmet, and the plastic brain scattered all over the counter. Under the helmet was an advertisement for the “Whine and Dine Club” for PD patients. I preferred drinking wine to whining about PD. Tom tried to assemble the parts of the brain by stuffing the helmet on top, but was unsuccessful.

Dr. Wheelock whirled in. When she observed that indeed my PD symptoms had worsened, she breathed a sigh of relief knowing that I now qualified for surgery.

She scrutinized the neuropsychologist’s report from the previous year. She hesitated, trying to be diplomatic. “The report indicated that you were having trouble multitasking.” I was offended and demanded an example.

“Tom, can you help me with this?” she asked. Tom, eager to be helpful, offered an example when we flew to the Texas Accordion Convention last month, and I discovered while on the plane to Dallas that I left my PD meds in Denver

“YES, Dr. Wheelock excitedly exclaimed, “that is exactly what I’m talking about.”

I glared at Tom and silently fumed. Tattletale, I thought.

However, Tom didn’t inform Dr. Wheelock that I worked until 8 PM the previous evening, drove home and packed, organized my music and clothes for the concert, meticulously took my accordion apart and packaged it with bubble-wrap to protect it from damage while en route, stayed up until midnight, slept for three hours, caught the 4 AM shuttle to the airport, and most importantly, that this was the one and only time since my PD diagnosis nine years ago that I had ever forgotten my PD medication.

***

I've noticed slight cognitive impairment since the surgery. Sometimes, particularly when the meds aren’t effective, I experience slow thinking. I can’t get the right word out quickly enough or I forget the name of someone that I don’t know well.

Instead of writing down the items I need at the grocery store, I sometimes use a mnemonic for remembering several items. For example, “HOME” might be Monday’s cue and refer to Honey, Oranges, Milk, Eggs. Wednesday’s mnemonic might be “CAT” and might represent Cookies, Apples, Tea. The problem arises if I am the store on Wednesday, and can’t remember “CAT” but do remember “HOME.”

I was imperfect before surgery, and I’m imperfect now.