Dr. Michael Okun Parkinson’s Consultation

Fixel Center for Neurological Diseases at University of Florida–Philosophy and Photo Credit

Traveling to Movement Disorder Specialist

I was excited to be on a Sunday road trip on December 2, 2018, to Gainesville, Florida to meet Dr. Michael Okun, world-renowned  movement disorder specialist. In 2002, Dr. Okun and Dr. Kelly Foote formed the University of Florida Health Center for Movement Disorders & Neurorestoration to bring together experts in movement disorders from diverse disciplines from all over the UF Campus. Today the Fixel Center for Neurological Diseases, the Movement Disorders and Neurorestoration Program is an international destination for patient care, research, and teaching. Consolidated in one centralized location on the 4th floor of the Orthopedic and Sports Medicine Institute, the staff coordinates a myriad of advanced medical and surgical services to deliver motor, cognitive and behavioral diagnosis and treatments.

I am fortunate to live five hours from Gainesville. A Hilton hotel is conveniently located across the street from Fixel Center. My appointment was at 11 a.m. on Monday, December 3. I was instructed not to take my carbidopa/levodopa or Azilect after midnight on the day of appointment. Although I am rarely in public without being dosed, I walked to the restaurant with some support from Joe. After breakfast, we moved the car across the street and headed to the 4th floor of the building by 10:30 a.m.

The Appointment Begins

The first stop was an intake area, and the receptionist confirmed basic information. She handed me a stack of forms to complete, but I had already completed on-line, so I returned them and was sent to the waiting room. Although almost full with two dozen people, we found two seats. Fifteen minutes later I was called into a room where vital signs as well as height and weight were recorded. I returned to the waiting room and a few minutes after 11:00, we were escorted to a doctor’s exam room. A staff member entered my current medications and pharmacy information.

Shannon Y. Chiu, M.D., Movement Disorders Fellow

Graduate of NY School of Medicine with Honors, Dr. Chiu specializes in Neurology.

Next Dr. Chiu came in and introduced herself as a Movement Disorders Fellow and took my medical history. Although my medical records had been faxed before ever making the appointment in July, they were incomplete. She first asked for a timeline of my symptoms. I had a copy of one of my blog posts—A 3-Year Timeline of Symptoms. I verbally described eight symptoms that had occurred leading up to a diagnosis.

Dr. Chiu was friendly, easy to talk to, and professional. Dr. Okun opened the door a couple of times joking with us, and said he was reading all about me. She had me do several neurological tests such as following her moving finger with my eyes without moving my head. She checked my balance and recovery as she stood behind me and pulled me toward her. We went out to a long corridor and she watched me walk and asked me to repeat the months backwards as I walked. We returned to exam room and she asked me to remove my shoes if easy to do so, and she checked my toes and reflexes. I took my PD medicine.

Michael S. Okun, M.D., Professor & Chair of Neurology, University of Florida; Co-Director & Administrative Director, Fixel Center for Neurological Diseases at UF

Dr. Okun–Voice of the Parkinson’s Patient

Dr. Okun entered the room and greeted Joe and me. We discovered he used to live in North Palm Beach  where I have lived since 1980. “We operate like a cabinet, here to offer advice, and it is your decision to follow it or not,” he said. My mission was to be optimally medicated to have the best quality life and to see what else I should do. He wanted to hear my story again. So in a narrative format, Dr. Chiu described my full history of symptoms in the background as he talked to me and performed some of the same tests such as eye movements and reflexes on my legs.  He confirmed Parkinson’s. But in the next breath, I was reminded it could be worse. I saw some of “the worse than me” in the waiting room, and I knew he was right. Dr. Okun shared his philosophy that a Parkinson’s patient can have  happy and meaningful life.

We talked about exercise, and Dr. Okun inquired what I did. Yoga and Tai Chi are two of my favorites. He emphasized the importance of exercise. He also watched me walk up and down the hallway and pulled me backwards. My meds had not reached my brain yet, so I was still walking awkward and was off-balance. I showed Dr. Okun my sleep diary and the effect of taking carbidopa/levodopa during sleeping hours versus not taking the medication. He explained that when I wake up and cannot sleep, I am depleted of dopamine and that is why I do not get back to sleep. So he agreed that I could take the same daytime dosage of c/l if I am sleepless at night.

Higher Dose Recommended

I have  been taking carbidopa/levodopa four times a day at 8 a.m. 1 ½ tabs, noon 1 tab, 4 p.m. 1 ½ tabs and 8 p.m. 1 tab. I will slowly phase into taking 1 ½ tabs each of those times and another dose if needed in middle of night. I also have the latitude to increase to 2 tabs each time if needed with hope of getting a full 4 hours between dosages without off episodes.

Physical, Occupational, Speech, and Swallow Evaluations

Dr. Okun recommended assessments for physical therapy, occupational therapy, and speech therapy as well as a swallow test. The results will be an important baseline going forward as well as identify any problems in an early stage that I can more easily address. These appointments can all be scheduled in one day at the Fixel Center. Then I can take the results back to professionals in Palm Beach County and work on any issues recommended. So I will return to Gainesville in April for these assessments. I will meet with Dr. Okun once a year. However, he and his staff are available to answer questions through messaging.

Do You Have Questions?

Dr. Okun asked me if I had any questions. When he was in medical school, he wrote poetry and the book, Lessons from the Bedside, was later published in 1995. In the Aphorisms chapter, “the body heals itself” caught my attention.  I asked him how he viewed this sentiment from the Parkinson’s perspective. He believes Eastern medicine has a significant role. He emphasized the importance of eliminating stress. I have had several experiences where stress has exacerbated Parkinson’s and joked that a hang nail throws me off! I asked him to sign the poetry book which he kindly did. His personalized inscription to me will forever be a motivation to keep on blogging.

He also asked Joe if he had questions. Joe’s concern related to driving and how long I could drive. Dr. Okun hears that question frequently from family members and sometimes has to have a professional evaluate the driver in a road test. Dr. Okun’s position is for me to continue to drive and go places for as long as I can. Joe mentioned that I scare easily or perceive a car is closer than it really is. That is true since I move slower, I view others moving faster whether they are or not.

A Prayer and a Plan

As the consultation drew to an end, I said a silent prayer in gratitude for Dr. Okun’s  genuine, caring, and unhurried approach. I knew I was one blessed gal with Parkinson’s to have Dr. Okun and his movement disorder Fellows on my care team. After he left, Dr. Chiu placed the pharmacy prescription and provided a handout on today’s recommendations plus information on constipation. I learned I could be involved in Parkinson’s research in the future even though I do not live in the area. We ended where we started at the intake desk. We made my appointments for 2019 and left the building at 1:30.

Blessings!

Linda

A Happy New Year To You

Raphael Tuck Vintage New Year Greeting Card

 

 

This Raphael Tuck & Sons, Limited greeting card is part of my private collection and was never posted or signed.  It was printed at the Fine Art Works in Saxony. Raphael Tuck and his wife started a business in 1866 in London selling pictures, greeting cards, and postcards. This New Year greeting card opens to an Antony Templemore sentiment. In 1893, Queen Victoria granted the firm the Royal Warrant of Appointment. Future sovereigns continued the warrant of appointment as indicated on my card. The back of this card states: Publishers by Appointment to Their Majesties the King and Queen Alexandra.

For a fun free database of Tuck  postcard images, visit here.

Blessings!

Linda

 

Prancer

Tuxedo cat on ice

Prancer

Meet Boots. He was not too sure about being on ice when I took this photograph. (I wasn’t either!!) But he patiently waited as I leaned out from the garage door.

Each year I create a calendar that features my family’s cats. Boots is the calendar cover and December photograph for 2018. He is quite a handsome tuxedo kitty, and he knows it and shows it! So I am not surprised that he struts around since he’s been doing so since his kitten days. He loves to have his photo taken and often poses for me like a star. I nicknamed him Bootsie.

Photo Credit:  Linda A. Mohr

To Be Sassy or Safe

When the temperature in Florida drops below 75 degrees, this boot lovin’ gal dreams of wearing her high heeled sassy boots! I stand in my closet and reminisce. Did I really wear these boots to work all day and then continue to teach a four-hour night class? Well, indeed I did! But that was pre-Parkinson’s and many years ago.

Shoe Selection Evolution

When I semi-retired in July, 2013, I stopped wearing high heels and opted for soft canvas shoes, flat sandals, and ballerina shoes. At first, I did not think I would ever learn to walk in flats. It was strange sensation walking so close to the ground. But I soon adjusted to “casual” and what was strange was occasionally wearing a low heeled shoe to a club meeting or dressy event! Therefore, one year later with a PD diagnosis,  I was primed for safety and comfortable over sexy and sassy. Slip-ons and zip-ups are now my best friends!

Time to Donate

This month we have had some temps in the 50s at night! I decided it was time to start letting go. I donated three pair of boots to one of my favorite thrift stores—St. Marks in Lake Park. I hope someone has as much fun wearing them as I did! In the meantime, I am better off staying closer to the ground.

How has your shoe style selection changed with Parkinson’s?

Blessings!

Linda

 

 

Preparing for First Visit with Movement Disorder Specialist

I am responsible for preparing for first visit with my movement disorder specialist to help achieve successful results. According to the Davis Phinney Foundation, Every Victory Counts manual,  “being prepared for your medical visit is by far one of the most important and least performed self-care tasks.”

The best advocate for my unique Parkinson’s care is me. I want to be active and engaged in the whole process, but it will be impossible to ask every question in one appointment. I respect my doctor’s  limited time to share his background and to offer medical advice. However, I want the appointment to go smoothly, to get the most benefit possible, and to foster an ongoing relationship. Preparation is the key to having a successful appointment during our time together.

Preparing for First Visit Plan

  1. Get address, driving directions, and tips on finding the office.
  2. Make arrangements for hotel, car rental, flight, driver, baby sitter, or pet sitter.
  3. Research doctor’s bio. Look for common ground for conversation.
  4. Read books, blogs, or journal articles written by doctor.
  5. View videos and podcasts featuring the doctor.
  6. Read articles and reviews about the doctor written by others.
  7. Print and complete forms at home or submit online when possible.
  8. Collect requested medical records, test results, and pertinent imaging.
  9. Set up medical portal when directed.
  10. Prepare a list or talking points of your top 3-5 concerns or questions. Write out the entire thought rather than a key word or two. Understand you may not have time to ask all the questions, so prioritize.
  11. Keep diary regarding any major issue.
  12. Prepare a list of your motor symptoms and non-motor symptoms.
  13. Prepare a list of your medicine and dose information.
  14. Get instructions on what medicine to stop taking before appointment.
  15. Ask someone to accompany you and assign note-taking. Encourage partner to ask a question.

My Appointment Preparation—What I Did

When I made the appointment, the first available spot was five months out. I was not surprised as Michael Okun, M.D. is an internationally known Parkinson’s expert. I grabbed the appointment in gratitude and also scheduled hotel and pet sitter. I selected Dr. Okun  because I simply wanted the best movement disorder specialist on my care team board of advisers.

I also wanted to learn more about this leading researcher who has written 400+ peer-reviewed articles and  is referred to as “the voice of the Parkinson’s disease patient.”  I found common ground (literally!) as he grew up in North Palm Beach where I live. He wrote a poetry book, Lessons from the Bedside, when he was in medical school (which I found and read). I also read Parkinson’s Treatment…10 Secrets to a Happier Life and 10 Breakthrough Strategies in Parkinson’s Disease. I read  his blogs and  watched several interviews and podcasts.

I completed three pages of forms relating to medical history and medications. I set up my medical portal after receiving instructions two weeks before my appointment. Messages to complete and submit additional questionnaires online were sent to me five days before the appointment. These included:

  • PDQ-39 Quality of Life Questionnaire
  • BDI-II Beck Depression Inventory
  • Beck Anxiety Inventory Survey
  • Cognitive Function Questionnaire (CFQ)
  • Falls Efficacy Scale
  • SWAL-QOL Symptom Profile
  • Questionnaire for Impulsive-Compulsive Disorders in Parkinson’s Disease – Rating Scale (QUIP-R)

 

My key concerns were identified and written out. One major non-motor symptom related to sleep. Rather than saying I don’t sleep well or I wake up several times a night, I kept a sleep diary to take with me. I have too many meds to remember accurately, so the list will be helpful. I planned to stop carbidopa/levodopa and Azilect at midnight before my 11 a.m. appointment as directed. Joe will accompany me.

I am prepared for the road trip and prepared to meet Dr. Okun. and his staff.

Question:  How do you prepare for your neurologist’s or movement disorder specialist’s appointment? Thank you for sharing your comments.

Blessings!

Linda

© Can Stock Photo/Alex Millos

 

 

 

 

 

 

 

 

Christmas Palm in December

My Christmas Gift in Florida

Trees indeed have hearts. ~ Henry David Thoreau

I do not need to flip a calendar to signal December’s arrival. All I have to do is look out my third story office window to view my favorite palm–the Christmas palm. My Florida front yard is a riot of scarlet red as the tree’s clusters of fruit burst into bloom day by day.

A Miracle of Nature Unfolding

I am fascinated how this happens! In the summer, small green flowers bloom and turn into round green fruit. Around Thanksgiving, the green fruit begins to ripen and to look like glossy Christmas ornaments!

This magnificent Christmas palm is eye level as I work at the computer. The squirrels love to play in the tree. They pick the hard red fruit and hide it in other spots of the yard. My cats Chauncey and Grace are entertained (or tormented) as they watch these antics from the window ledge.

Each of the three trunks originally has three clusters of flowers. Some years one or two of the clusters do not last until December due to hurricanes or to squirrels prematurely storing green gifts!

 

Photo Credit: Linda A. Mohr

Parkinson’s Treatment:10 Secrets to a Happier Life

Parkinson’s Treatment: 10 Secrets to a Happier Life

By Michael S. Okun, M.D.
Published 2013

Within a couple of weeks following my 2014 PD diagnosis, Parkinson’s Treatment: 10 Secrets to a Happier Life was the first book I read. Dr. Okun’s book was the right one for me at the right time. The aim of the book is to inspire faith, plant the seed of hope, help patients to discover their core values, and use the secrets to improve lives. The book did that for me and continues to do so, since I revisit it annually. Translated into 20+ languages, it is the most read Parkinson’s disease treatment book In the world. I was also pleased to see the book distributed free when I attended the 3rd World Parkinson’s Congress in Portland in 2016. Unaware, the stage was being set for Dr. Okun to impact my PD life in other significant ways.

Linda’s Cause for Pause Passages

“Hope leads to happiness, and happiness will lead to a meaningful life.”

“It is possible to alter the natural course of a journey, and to avoid the many pitfalls that can quickly escalate into a healthcare nightmare.”

“Your aha moment, after a diagnosis of Parkinson’s disease should be a well-placed confidence that your journey is not over and that productive years lie ahead.”

“Suspicion usually circles around four main conditions:  Alzheimer’s, Lou Gehrig’s, strokes/brain tumors, and Parkinson’s.” (Chapter one is excellent in differentiating between the four diseases by knowing the signs)

“One of the most important secrets about Parkinson’s disease is that the timing of medication doses is in many cases more important than the dose itself.”

“If your disease is changing and your medication dosages and dosage intervals are not changing to accommodate your symptoms, you may not be medically optimized.”

“Exercise is like a drug and a daily stretching and exercise routine may be of significant benefit….but remember is you don’t break a sweat it probably doesn’t count.”

“The general public may confuse Parkinson’s disease for Lou Gehrig’s or Alzheimer’s, but we must remind the Parky that they are very different and on average have an opportunity to live a long and healthy life.”

Blessings!

Linda

 

9th Annual ABCs of Gratitude 2018

Missouri Cotton Candy Sunset

If you only say one prayer in a day, make it ‘Thank You’Rumi

I  cannot be in gratitude and be unhappy.

In 2010, I created my first ABCs of Gratitude list.  I now look forward to this project every November. The simple yet thought-provoking exercise is a unique way to reflect on the year. Grab a sheet of paper and label it A through Z. Fill in with your blessings. If you get stuck on a letter, a dictionary is permitted!

Wayne Dyer believed that if you get to a place of gratitude you will experience peace. Be in a state of gratitude for everything because there is something to learn in everything. Be grateful even for the pain because there are lessons to be learned from it. According to Ingrid King gratitude is a wonderful way to raise your vibration and shift your energy. The vibration of gratitude is a powerful force. It can shift your mood and your thoughts from a place of scarcity to a place of abundance.

In keeping with my annual Thanksgiving month tradition, my 2018 ABCs of Gratitude list is listed below. I find it interesting to compare my list to prior years. Looking back, some years had more ups, and other years had more downs. But in the end, I always found 26 blessings. This year is no different. Most of my days have ended with awe inspiring sunsets such as the one taken from my brother’s backyard deck in the country.

My ABCs of Gratitude for 2018

Angels on Duty Anthology…Angel by My Side poem

Angels on Duty

Board Director…DAR Seminole Chapter

Creative Genius Anthology…My Parkinson’s Muse essay

Creative Genius

Dineen…stress buster housekeeper

eBay Seller Plus…1000+ reviews

Fennelly State Poet Laureate…workshop leader

God…providing healing and hope for Judy

Highland Park Anthology…Power Struggle poem

Highland Park Anthology

Invigorate…Dr. Sarah King Parkinson’s exercises

Joe…my love, my rock, my partner

Kitties’ 8th Birthday…Grace, Chauncey, Rosebud, Tigger, Boots, Angus

6 Kitties, 4 weeks old

All Grown Up! Rosebud, Angus, Boots & Tigger

More Grown Ups! Grace & Chauncey

Lake Yellowstone Hotel…mountains and lake room view

Peacefulness–What a View!

Marsha at Perry Consulting…PD website diva

Nieto…compassionate doctor

Okun…internationally known movement disorder specialist

Parkinson’s My Way…website and blog launch

Quietude…meditative nature walks

Lane to Family House

Reunion…50 year high school class ‘68

School Teacher Mrs. Kice…special visit

June Kice. my 7th & 8th Grade Teacher

Ten Year Anniversary…member Daughters of the American Revolution

Uncles (great) Carl and Rupert…honor sacrifice 100 year WW

Honoring Rupert’s place of death Naix, France

Vinnie Ream Award Finalist…Voice Within poetry collection

Wood Stairs…Nic’s skillful renovation

X-rays…caring Active Health Center 

Yellowstone National Park…trip with Joe for memory bank

pastel stone, water

Yellowstone Canyon

Zeal for Exercise…keeping Parkinson’s at bay

What are you thankful for today and for this year?

Blessings!

Linda

Please Pass the Cranberry Chutney

My Parkinson’s Kitchen Mantra

Experimenting with new recipes and creating my favorite standbys were enjoyable pastimes prior to Parkinson’s. With some thought and careful recipe selection, they still are.  My mantra is simplicity. A fifteen ingredient dish that requires three bags of groceries to lug home, has dangerous peeling, slicing, and dicing, and uses multiple bowls, pans, and utensils creates anxiety. Who needs that?

A traditional dish I prepare during Thanksgiving week is cranberry chutney. I have used this recipe for a couple of decades, and it passes the simplicity test!

Holiday Cranberry Chutney

1 12 ounce bag fresh or frozen cranberries

1 ¼ cup sugar (note—I use ¾ cup of sugar)

¾ cup water

1 large tart apple, chopped (do not need to peel)

2 teaspoons cinnamon

1 teaspoon ginger

¼ teaspoon ground cloves

Directions:  Combine all ingredients in saucepan. Bring to a boil, stirring constantly. Reduce heat and simmer for 15 minutes or until apple is tender and the sauce is thickened. Cool. Store in refrigerator.

Credit: Best of Taste of Home—1st Ten Years.

Why I Like This Recipe:

Pretty in Crystal

  • Have all ingredients in pantry except cranberries
  • Requires only 7 items
  • Can decrease amount of sugar (which I need to do) and still have great chutney
  • Do not have to peel apple (which I can no longer safely accomplish)
  • Easy to prepare (mix and cook in same pan)
  • Easy to clean up
  • Can add variations such as orange sections or walnuts or raisins
  • Pairs nicely with turkey, pork, ham, chicken or cream cheese
  • Keeps for several days in refrigerator

Joe and I will enjoy our 15th Thanksgiving dinner at The Chesterfield’s Leopard Lounge this year. But we are sent home with generous leftovers. My chutney is the perfect accompaniment.

Blessings!

Linda

Honor Great-Uncles on 100 Year Anniversary World War

To commemorate the 100 year anniversary of the end of World War I on November 11, 1918, I pay tribute to my two great-uncles who sacrificed their lives.

 

Carl Albert Roasa

PVT, CARL A. ROASA

My great-uncle, Carl A. Roasa, was inducted into the Army/Marine unit on July 5, 1917, in Kansas City, Missouri. He served overseas from May 20, 1918, until January 17, 1919, where he died in France of pneumonia at twenty-two years, ten months, eight days.

Granger Cemetery near village of Granger, Missouri

His parents, Albert and Laura Roasa, bought land, planted trees, and started Granger Cemetery for the burial of Carl Albert. He was the youngest of six children including five boys and one girl.  I read in Carl’s war records that his mother was notified of his death. I picture my great-grandmother receiving this devastating news of her beloved son, and my heart breaks.

Carl A. Roasa’s Grave Stone

Carl’s memorial card included this beautiful James Whitcomb Riley poem:

I cannot say and I will not say

That he is dead—He is just away!

With a cheery smile and a wave of the hand,

He has wandered into an unknown land,

And left us dreaming how very fair

It needs must be, since he lingers there.

Mild and gentle, as he was brave

When the sweetest love of his life he gave.

Think of him as the same I say:

He is not dead—He is just away.

A Soldiers’ Memorial was established near the Scotland County Courthouse in Memphis, Missouri, in 1923, led by the Betsy Ross Club. Other organizations joined forces including Home Guards, Order of the Eastern Star, and Mothers of Soldiers.

Soldiers’ Memorial, Memphis, MO

The names of the soldiers who made the ultimate sacrifice from the area were chiseled on the memorial pillars. The honor roll of twenty-five soldiers includes Carl A. Roasa. The engraving reads “In memoriam to the boys from Scotland County 1914 ~ World War ~ 1918, they gave their all for liberty and democracy.”

Honor Roll

 

Rupert Charles  Seyb

 

PVT. RUPERT C. SEYB

My great-uncle, Rupert Carl Seyb, enlisted in Sanborn, South Dakota, on June 5, 1917. He served as a private in Company F, 350th Infantry with American Expeditionary Forces. He died from influenza in Naix, France, on February 23, 1919, at twenty-six years, two months, sixteen days.

Honoring Rupert’s Place of Death at Naix, France

Rupert Seyb Memorial Card

He is buried at Saint Paul Cemetery near Kahoka, Missouri. (My home town)

Rupert C. Seyb Grave Stone

World War I Ancestors Who Served and Survived

Great-Uncle Floyd and Great-Uncle Hubert Roasa (brothers of Karl Albert Roasa)

Great-Uncle Raymond Seyb  (brother of Rupert Seyb)

Great-Uncle Henry Mohr

In Gratitude

The memories of each of these brave great-uncles hold a dear place in my heart. I will always remember their service and sacrifices.

Blessings!

Linda