Category: Parkinson’s Disease

Must Read, Parkinson's Disease, Parkinson's exercise, Support Groups

Two Major Advances for Parkinson’s Care in Tampa Bay

gthelen

 

I returned Sunday from Denver where I participated in the national rollout of the most exciting self-help program for PD that I have ever experienced.  Tampa Bay is one of eight metro areas chosen to pilot a national training program like no other. It provides Parkies the knowledge and tools to become masters of their treatment in order bend their PD trajectory in the right direction.

Tampa joins Richmond, Detroit, Houston, Phoenix, Denver, Boulder and Philadelphia in piloting this national program. One Parkie evaluator called it “life changing.” (I enthusiastically agree it will accomplish that for most enrollees.) The presenting organization is the Parkinson’s Disease Foundation.

 

The program is Self-Efficacy Training customized for PD. Between 26 and 36 newly diagnosed Parkies and their helpmates will meet once every month in two and one-half-hour sessions. They will start in September 2016 and finish in June 2017. Participants will acquire the disciplines and skills necessary to take charge of their condition, becoming captains of their treatment teams.

 

This contrasts with the all-too-common wandering in the PD jungle of confusion and ignorance dealt many new Parkies today. I will co-lead our program with Sherry Harlan, an experienced and dedicated USF health administrator.

 

For me, this program is a high point in my work to help Parkies escape the passivity and despondency that grips many newly diagnosed Parkies.

 

I also learned today that Hillsborough is getting its first Rock Steady Boxing program. It is owned and directed  by an experienced therapist I trust. It will open soon in the Westshore area near downtown Tampa. The only existing Tampa Bay program is in Pinellas County just east of Indian Rocks Beach, a very long haul from most of Hillsborough County. I will transfer my Rock Steady training, halving the 94-mile roundtrip. It will need recruits beyond me. Interested Parkies should email  me at gthelen1@icloud.com.

Must Read, Palliative Care, Parkinson's Disease

What’s Your PD “plan”?

gthelen

The “I” and “we” in this post are composites of my own experiences and those of the many Parkinson’s patients I have talked with since my diagnosis in 2014. This column is dedicated to the memory of the late Dr.Thomas Graboys, an extraordinary Boston physician who died with Parkinson’s disease. His legendary dedication to patient understanding and welfare is reflected in the care model I discuss.

Dear Doctor:

D-Day, diagnosis day, for my Parkinson’s was a disaster. Your words destroyed my rationalizations about what was causing my problems. Suddenly, I have a progressive neuromuscular disease, one that’s treatable but not curable.

I pressed you on prognosis. “At your age of 75, something else will kill you first,” you finally said. Your smile suggested humor. I found nothing funny or comforting in the words. Neither did a friend who was told on her D-Day: “You will only feel worse as this progresses.”

Another friend went to pieces after her D-Day.
choirbreathing
“My life began to unravel,” she recounted. “I became reckless, hell-bent on having a good time before the disease took complete control. I shopped libreathing

choirke crazy, partied and drank hard. I ignored mundane tasks, like paying bills and taking care of my house.”

Most of us only were told to follow instructions for beginning the medication carbidopa-levodopa and to return in three months. By that time, our response to the medication would seal the diagnosis. No other readily available laboratory test exists for PD.

That was it. Session over. No words about diet, exercise or any real information on the disease.

Your short message may be OK for other disease diagnoses you make. But I wanted and needed more from you because Parkinson’s often is a progressive wasting disease that would affect every aspect of living, as I had known it.

I wish you had said words to this effect, as Thomas Graboys did with his patients: “We are in this together. I will walk with you the whole way. I’m writing down my home number. Call when you need me.

“Here’s a short brochure providing you essential information about the disease, places to seek additional, verified information and a brief description of an organization available to you for your journey. The brochure briefly describes sharing your diagnosis with loved ones and others. I want you back in one month to dig more deeply into all this.”

You would say that patients who do well with the disease don’t let it own them—they own and control it. You don’t have to do this alone, you would say: “We will develop on that next visit what I call the ‘plan.’ ”

I wished you, my physician, would explain how there is an organization I could join that would have regular educational seminars about PD, special programs for caregivers and recommendations on finding the physical and other therapists who could attend to my needs.

You would say you would work closely with the organization to see that care provision was customized as needed. You would reduce my anxieties and provide an organizational anchor point where my needs would be met.

You would write out the medications you were recommending and what they were for. You would ask me what I thought was a reasonable exercise regimen within my abilities. We would discuss dietary and other lifestyle changes that would help me enhance my life. You would call it the “plan.”

It was the “contract” between you and me that, if adhered to, would help ensure a positive outcome. And because the “plan” was personal to each patient, it was more likely to be honored.

Just leaving the office with that plan in hand would inspire hope in me because implicit was the message that there were things I could do to take control of my illness.

Indeed, while there may have been three hundred words on that page, it really was just one: “hope.” The written plan would inspire hope that by following the instructions I could enhance my chances of living out a fairly normal life.

The Graboys approach and the Graboys “plan” are the exception in most clinical settings today.

The result is documented, widespread confusion among PD patients about their condition. A 2014 Harris survey of Parkinson’s patient showed that only 57% feel informed about how PD commonly progresses; just 46% feel informed about treatments for non-motor symptoms; and 54% feel informed about treatments for motor symptoms.

In other words, a stunningly high number of PD sufferers don’t understand what’s staring them in the face and what’s ahead for them.
The dedication of physicians for their Parkinson patients is not in question. In fact, as my Parkinson’s Disease Foundation colleague Kirk Hall has written, we PD patients owe the medical community a large debt of gratitude. “Many of these folks, whether they be doctors, nurses, researchers or technicians, work very hard to meet our needs in challenging circumstances (long hours, limits on length of patient visits, heavy patient loads, emergencies, bureaucracy, and unending paperwork.)”

What’s needed is a system for Parkinson’s care that those dedicated professionals can utilize. We don’t have it now but need it as soon as humanly possible

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

Check two workshops for Parkies. One for breathing exercise and the second for singing. Therapists are on both to slow the progression of PD. The word comes from speech therapist Cara Bryan, a Florida Hospital-Tampa stalwart, who is leaving FHT for private practice. Her many fans wish her the best. Click each for more info.


Breathing

Chior

 

Parkinson's Disease, Parkinson's exercise, Support Groups

My Parkinson’s Crash Course

gthelen

I wasn’t ready for a crash course in neurology that day two years ago. I was enjoying semi-retirement, assuming my medical writing days were far behind me. But then the doctor said, “You have Parkinson’s disease.”

Ever since, I have been immersed in Parkinson’s 101: what it means to live with a chronic neurological disease.

This month is Parkinson’s Awareness Month. Accordingly, I think even more about the 5,000 people in the U.S. who will also hear those words this month.

What do I wish I had known when I was diagnosed?

 It’s a snowflake disease. Just like a snowflake, each of us is unique and so is our Parkinson’s. Do not assume your disease will look like someone else’s.

Some symptoms are invisible. Because many of us associate Parkinson’s with movement symptoms, we may ignore signs of depression, fatigue, constipation, or sleep problems (especially acting out nightmares). In recent years, the medical field has recognized that such symptoms are part of the disease. If you experience them, tell your doctor so they can be diagnosed and treated for what they really represent.

A Parkinson’s specialist can help. Most of us see a general neurologist for our care, without realizing we might benefit from seeing a movement disorder specialist. Those neurologists, who have undergone two years of additional training, can help us to better manage the disease and stay current on research and clinical trials.

Staying active is essential. Parkinson’s may affect our movement, but staying active can help in the long run. Research shows that intensive, sustained exercise (such as boxing, hot yoga, interval cycling) can ease symptoms and combat fatigue. And that regular daily activity (going for walks, doing the laundry) can help improve life with Parkinson’s.

We can benefit from complementary care. In addition to medications, we can benefit from physical, speech and occupational therapy and the knowledge of nutritionists and psychotherapists. Putting together a care team of these professionals early on can pay off for years to come. But due to the fragmentation of PD care delivery, it takes effort on your part to assemble that team.

All support groups are not created equal. Support groups have different constituencies (young/elderly onset, newly diagnosed), different energy levels, different ambitions and agendas. Shop widely before you choose.

There is a lack of localized information. Patients want close-to-home answers. Where do I locate the physical therapy that doctors often suggest? How do I find a personal trainer who specializes in PD? Who can help me make my home safe from falls? Where do I enroll in recommended Tai Chi, spinning or boxing classes? In most locales, there is no one place to find answers to those and dozens more local questions. National PD foundations offer effective national advice but can only do so much at the granular, local level.

We can live well. Most importantly, I learned it is not only possible to corral the disease but essential to do so. Never, never give in to the disease or lose hope. Cognitive decline and dementia are worrisome (but not inevitable) accomplices to PD neuromuscular difficulties. Find your passions. Mine are advocating for research, raising awareness and sharing validated information.

Also remember that you are not are not alone. There are 1 million of us nationwide. Groups such as the Parkinson’s Disease Foundation and the National Parkinson Foundation are available to support us. Contact them to find information and resources. Together, we can not only live well with Parkinson’s, one day we can end it.

Parkinson's Disease, Research, Support Groups, Uncategorized, USF

More on living well with PD

gthelen

I spent time last week in virtual conversation with two very interesting people who have much to say about living well with Parkinson’s disease.

One is John Baumann, a motivational speaker now living in Sarasota. He has tamed his PD with a fierce exercise routine and steely determination.

The other is Diane Cook of Denver, a leading proponent of employing self-efficacy principles in better managing PD.

The two come from different backgrounds but converge at a common point.

Baumann, who will speak to the Sun City Center support group and guests Monday April 18, boils his message down to this:

“ Whatever hand life deals you (whether your fault or not), whatever life-changing adversity you have to endure, you still have some control over it, to not just live well, but live an AMAZING LIFE. It takes faith in yourself, discipline, determination, desire, intensity, inner strength. For me, it was having Parkinson’s disease in my 30’s; I am 54 today and have very few symptoms.”

The support group invites all Parkies and caregivers to attend this special event sponsored by the South Shore Coalition for Mental Health and Aging. The meeting is 1:30 – 3:00 p.m. at Sun Towers Retirement Community 101 Trinity Lakes Dr. Sun City Center. For additional information call Debbie Caneen at 813-892-2990

A National Parkinson Foundation grant springing from money raised at last year’s Moving Day Tampa Bay walk supports his talk.

•

This year’s walk is Saturday at the University of South Florida Marshall Center starting at 9:00 a.m.
The event is for all ages and abilities. You will see a variety of movement activities, such as yoga, Rock Steady Boxing, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives. For more information go to: http://www.MovingDayTampaBay.org

•
Diane Cook’s explanation of how self-efficacy works in PD is quite similar to Baumann’s philosophy:

“Our belief in our own capacity to produce positive outcomes from our actions determines what we are able to do with the knowledge and skills we have. Our self-efficacy beliefs are more about what we think we can do with our skills than they are about what skills we have.

“Self efficacy is about having the confidence to be able to integrate our skills into a course of action and perform under a specific set of circumstances and challenges, such as managing chronic, progressive disease. Our self-belief influences our thought processes, emotional state, motivation, and patterns of behavior. It influences the challenges we undertake, the effort we expand and our perseverance in the face of difficulties.”

Cook offers a short, intriguing self-evaluation for you to take to measure how well you are managing your condition. It’s found here:

Click to access Self-Efficacy_Brochure_projectsparkorg_1.pdf

•

In my reading this week, the web brought me some interesting observations from Australian Ben Basger. He is a lecturer and tutor in pharmacy practice, Faculty of Pharmacy, The University of Sydney. Here they are:

”The earliest pathological evidence of PD starts in the nervous system of the gut, medulla and olfactory bulb and spreads transneuronally to the midbrain (substantia nigra) and then the cortex. This may explain why non-motor symptoms of PD, such as constipation, hyposmia (reduced ability to smell) and rapid eye-movement sleep disorder often precede the typical motor symptoms, and why cognitive impairment is nearly always found in people with longstanding PD.

”These non-motor symptoms, together with fatigue and depression, may precede diagnosis by as much as 25 years.

“Advancing PD is further complicated by the loss of non-dopaminergic neurons, contributing to disturbances of gait, posture, autonomic nervous function, speech, cognitive function and sleep that may become unresponsive to dopamine. Dopamine replacement alone becomes inadequate.

”Although PD is a progressive disorder, deterioration is typically very slow, with considerable individual variability. The time to commence drug treatment for motor symptoms is when they are causing physical or psychological disability. It is a misconception that PD treatment is only effective for a limited time and should be deferred for as long as possible to reserve that benefit.

“All dopaminergic medications can cause nausea, gastrointestinal symptoms, hypotension, drowsiness, cognitive symptoms and impulse control disorders, but these are more common with dopamine agonists (e.g. pramipexole, ropinirole) than with levodopa/dopa decarboxylase inhibitors (LD/DDIs).

“For most patients with PD, motor fluctuations and dyskinesias (abnormal movements) are not disabling and can be adequately managed by manipulating the oral drug regimen.

”The incidence of dementia increases with duration of PD. It is characterized by fluctuating cognition and visual hallucinations. Cognitive impairment affects up to 75% of people who have had PD for at least 15 years, although the main risk factor is advancing age.”

Must Read, Parkinson's Disease

A GREAT TAKE ON PD NON-MOTOR CHALLENGES

gthelen

Meet Dr. David E. Riley. I did recently when we were together on the Parkinson Research Foundation’s Caribbean educational cruise.

Dr. Riley, an MDS specialist, recently opened an integrated PD patient care center in Cleveland, Ohio. He modeled it after Parkinson Place in Sarasota.

His presentation on the non-motor aspects of PD was outstanding. I asked him to present highlights as a guest blogger on shufflingeditor. Read and enjoy.

Non-Motor Aspects of Parkinson’s Disease

One of the most important developments in the study of Parkinson’s disease in the last 25 years has been recognition of its non-motor complications. Neurologists still diagnose PD by identifying the traditional motor manifestations (tremor, slowness, soft voice, small handwriting, etc.), but have come to realize that, for many people with PD, their non-motor symptoms can become even more of a problem.

What are these non-motor manifestations? So many have been identified in PD that they are organized into categories. They include cognitive and psychiatric complications, autonomic nervous system disturbances, and sensory abnormalities and sleep disorders. Each of these groupings comprises a number of distinct problems, although they are often interrelated.

The term “cognitive” refers to higher functions of the nervous system usually recognized by the terms “thinking”, “processing”, decision-making, memory, communication, and so on. “Dementia” refers to a loss of more than one of these capacities. People with PD are at high risk of dementia. It is an ominous development, not only due to the problems it produces, but also because it limits our ability to treat other manifestations of PD.

The term “psychiatric” generically refers to a group of disorders that physicians recognize as falling under the purview of psychiatrists, even though there are no precise divisions between these and neurologic disorders. Foremost among psychiatric complications of PD is depression, which will affect about 50% of people with PD at some point. Many people assume that it results from a reaction to disability, but depression often occurs before people even know they have PD, and is one non-motor manifestation that may precede the motor symptoms by many years. Other common psychiatric complications are hallucinations, illusions and delusions, which result from an interaction between the brain disease and the medications people take. Psychiatric manifestations of PD are frequently considered alongside of cognitive complications because they often coexist. Both are major sources of care partner/caregiver stress.

The autonomic nervous system is that part of the nervous system that functions “autonomously”, meaning on its own. It includes a variety of bodily functions governed by systems of reflexes that are not under our conscious control. Major responsibilities of the autonomic nervous system include regulation of blood pressure and heart rate, bladder and sexual function, digestive and bowel function, and control of perspiration and body temperature. PD potentially disrupts all of these. The most common symptom of autonomic impairment is constipation. Two autonomic problems that seem to cause the most disability are an inability to maintain blood pressure, resulting in lightheadedness and fainting, and loss of bladder control.

Sensory disturbances are an underappreciated aspect of PD. They include the loss of the sense of smell, another feature that can precede motor manifestations by years, and pain. A common sensory complication is the restless legs syndrome. This disorder occurs in about 3-4 % of the general population, but in about 20% of those who have PD.

Sleep disorders in PD have been the object of considerable study in recent years. They include insomnia, excess daytime sleepiness, and a fascinating tendency to act out one’s dreams known as REM-sleep behavior disorder. This last complication has become a major tool of researchers, because of its striking ability to predict the development of PD and related disorders many years beforehand.

Virtually all people with PD report some non-motor symptoms, but the number and types vary tremendously from person to person. This explains why no two people experience PD in exactly the same way. People with PD should embrace this knowledge and avoid presuming that another person’s complications will necessarily happen to them, or expecting that medications will affect them in the same way as someone else. I like to compare this variability of PD to a salad bar. Even though everyone comes away with a salad, the number and assortment of ingredients is never the same in any two people.

Non-motor manifestations are responsible for much of the disability and loss of quality of life of PD. For many, non-motor symptoms represent their greatest challenge in dealing with this disease. People with PD should become aware of their own non-motor symptoms and discuss them with their doctors, in order to deal with their PD comprehensively.

LOCAL BENEFICIARIES OF MOVING DAY TAMPA

A reminder about the Moving Day Tampa Bay walk benefiting the National Parkinson Foundation. It’s Saturday April 9, 2016 at the University of South Florida Marshall Center starting at 9:00 a.m.

Proceeds from the 2015 event were shared with four local PD patient care organizations:
Health and Aging Radio Show and Support Group for Caregivers and Hispanics at South Shore Coalition for Mental Health and Aging; PD Voice Therapy program at Florida Ear, Nose, Throat and Allergy; Patient and Caregiver Information Resource Forum at the University of South Florida, an NPF Center of Excellence; and Rock Steady Boxing at Bodyssey Performance and Recovery in Largo. The amount of the grants was not available.

The event is for all ages and abilities. We will see a variety of movement activities, such as yoga, dance, Pilates, Tai Chi, stretching and much more before the walk. The purpose is to celebrate the importance of movement in our lives.

My Moving Day team is Rock Steady Boxing. As I wrote on a previous post, I work out at Rock Steady at least three days a week. The program has made an enormous difference in my quality of life and sense of well-being.

Our team will demonstrate Rock Steady techniques at this year’s event.
Please consider being a part of my team or sponsoring me I encourage you to get your friends, family and coworkers involved. For more information visit http://www.MovingDayTampaBay.org

Parkinson's Disease, Support Groups

SHIP OF THE BRAVE

gthelen

The reportorial question I often ask when I am seeking to draw a person out is this: Why are you attending this event? Why are you here?

The question usually produces useful insights and understanding about motives and state of mind, not to mention a good quote or two.

I used it with caregivers for Parkinson’s patients who gathered for a weeklong cruise in the Caribbean this month. It was a monumentally naïve, even stupid, question in this context.

Their reason for carving out the time and money was, as one eloquently put it, “so we could be normal people on normal holiday enjoying one another and not objects of curiosity.” No cooking, cleaning or errands for a blessed week.

The cruise was the ninth sponsored by the Parkinson Research Foundation of Sarasota, which operates the renowned Parkinson Place. The 37couples came from states ranging from California to Texas to Ohio to Vermont to Florida. Most were Parkinson cruise veterans. They received two days of the highest possible level of educational seminars from acclaimed neurologists Juan Sanchez-Ramos and David Riley.

Great doctors aside, it’s the caregivers, most of them women, that I want to discuss. They are extraordinary people. They stand tall and brave in the face of their partner’s advancing disabilities.

They manage the aftermath of falls; manage spouses who wander and become lost; manage partners whose voices have become so soft it is difficult to understand what they are saying; manage spouses who had regressed cognitively to the level of a three-year-old; manage partners so immobile they require almost full-time attention.

Observing those brave caregivers was a heartbreaking privilege. They were cheerful, upbeat and admirably social. The tears came quietly when they described how good their lives once were and how much their partner was now suffering the ravages of a relentless, unpredictable and incurable malady.

I will never forget the couple from California. She is a retired healthcare professional who has directed her still robust energies towards making the care of people with Parkinson’s better.

Her husband has had Parkinson’s for 25 years, but you would never know it. He remains the bear of a man who once played football and still visits the gym for as many workouts as possible.

He said our cruise would be his last. His energies had declined so much he could no longer participate in the manner he preferred. His wife’s eyes glistened as he spread that final goodbye to his fellow cruisers.

At the opposite experience pole was the Florida couple with a very recent diagnosis of Lewy body disease, the fiercest kind of Parkinsonism. The man had already lost his ability to drive. He was experiencing hallucinations. His wife was struggling to understand what had happened to her husband and what resources she needed to find immediately to deal with the rapidly escalating symptoms.

The best I could do was point her to Parkinson Place for support and care and give her the remarkably informative booklet from the Parkinson’s Disease Foundation: Parkinson’s Disease Q&A, Seventh Edition, a must read for the newly diagnosed.

The Parkinson Research Foundation’s Parkinson Place Director Marilyn Tait, was relentless in pounding home this essential message: caregivers’ No.1 job is to take care of themselves. Unless they did, they would lack the stamina and clear headedness to care properly for their loved one.

In a posting by Marty Beilin from the Well Spouse Association, Maggie Strong offers a similar message. She describes three progressive stages that typify a caregiver’s life.
The Heroic Stage

“The diagnosis is in, and a productive panic energizes you and family members. You want to learn as much as you can about your spouse’s illness or disability. Doctors and other experts are consulted. You read everything you can on the subject…
Optimism often abounds during the heroic stage….

“But over time when there is little improvement or decline sets in, hope slowly fades and optimism turns to despair… The heroic stage comes to an end as you come to terms with the reality of your spouse’s condition and prognosis.

Ambivalence

“Long-term caregiving sets up debilitating internal conflicts. On the one hand, you want to support and care for your partner. It’s the right and moral thing to do. You are motivated by love, or a sense of duty, or societal expectations. At the same time you feel physically exhausted. Financial concerns mount. You may have to quit your job. Intimacy is difficult or impossible. You don’t see a future. You want to get out…

The New Normal

“In this third stage, balance, resolution, and inspiration empower caregivers to live much more fulfilling lives. You recognize and come to terms with the long-term nature of your situation. But you no longer put off or set aside your desire to pursue your own interests and dreams…

“To achieve balance, you communicate more openly with your spouse and take steps needed to resolve the often difficult and painful issues in the marital relationship…

“The new normal is achieved when we no longer go about our caregiving responsibilities with resentment but attend to the needs of our partner with love.”

For more information about Parkinson Place in Sarasota, FL or to learn more about Parkinson Research Foundation’s Educational Cruise 2017 please visit ParkinsonPlace.org or call 941-893-4188.

Addendum

1. The Well Spouse Association is a community of spousal caregivers for the chronically ill and/or disabled. It offers support groups, an online chat room and forum, and mentors. It sponsors bi-monthly weekend respite events. It also shares best practices on how to carve out time for caregivers daily or weekly. Contact information for the dues-paying organization is 1-800-838-0879, http://www.wellspouse.org and info@wellspouse.org.

2. 2017 PRF Educational Cruise
March 17-26 sailing from Port of Miami to Southern Caribbean on Royal Caribbean’s Navigator of the Seas. Stops in Haiti, Curacao, Aruba and Bonaire.

Parkinson's Disease, Parkinson's exercise, Research, USF

South Tampa YMCA on the PD Move and a Fine Haus(er) Party

gthelen

South Tampa Y Explores PD Exercise Expansion

The South Tampa Family YMCA is sprinting towards creation of a second exercise program for people with Parkinson’s. The Y’s strong start with its cycling program has encouraged key leaders to explore more exercise programs aimed at PD.

The South Tampa Y’s stationary cycling program has exploded from 6 to 20 members in just over two months. Participant reviews are very strong and many expressed interest in additional new programs, such as the Rock Steady Boxing program in Largo. Current Hillsborough exercise programs aimed at PWP include yoga, tai chi, the Jewish Community Center’s new program and LSVT Big.

Y leaders Melissa Brockman and Nancy Belli have become enthusiasts for strenuous exercise programs for Parkies. They are urging other local YMCAs to start cycling programs. They are also talking with physical therapist Jason Kimber about the vigorous exercise program for PD that he designed. Kimber, who has relocated from South Florida to Tampa, wrote a guest blog on Shufflingeditor on February 2. Kimber has developed a program that includes elements similar to Rock Steady. Kimber’s program includes rigorous, whole body movement exercise that utilizes components of boxing, yoga, balance and strength training, as well as stretching. “Those take your body through atypical movement patterns that can help to retrain the brain,” he wrote.

Y leaders are looking for innovative program ideas. Kimber’s certainly appears to qualify. An added plus is the Y can bring it to market faster than a Rock Steady program.

USF’s Haus(er) Party

Dr. Robert Hauser and his staff at the USF Health Byrd Parkinson’s disease and movement disorders center threw one fine house party last Saturday for more than 200 persons with an interest in PD.

The day’s activities included presentations on DBS surgery, speech and language therapy, legal issues, and a physical therapy program known as LST Big.

The speakers covered ground familiar to readers of this blog. But I was intrigued with comments from Dr. Fernando Vale, a USF neurosurgeon. Among them:

• Still active USF surgeon Don Smith did the first DBS operation in the U.S. in 1993.
• 150,000 implants have been done since then.
• The 7-10 year surgery window. After an initial diagnosis it s deemed the sweet spot for DBS.
• Vale said the surgery “makes your life better but not ideal.”
• The surgery results in a reduction and the need for medications such as carbidopa-levodopa.
• There is “only a small chance that early surgery will delay progression of the disease.”
• Vail cities the next surgical step being about how to “repair damage and regenerate neurons.”

The lawyer who spoke, Jack M Rosenkranz was especially impressive about the legal safeguards Parkies should put in place. If you haven’t taken care of the estate planning guardianship and other issues, Rosenkranz would be a good one to consult.

Hauser closed the show with a wide-ranging review of current research efforts, his forte. As always, he urged his audience to volunteer in research projects.

While at heart a researcher, Hauser has been an important and public proponent of patient care initiatives and reforms.

Hauser was an early proponent and financial supporter of the Rock Steady Boxing program. He teamed with the Jewish Community center here to start their new exercise and caregiver program. He has supported my idea of a local helpline for Parkies.

Parkinson's Disease, Parkinson's exercise, USF

USF PD Seminar Saturday, plus Exercise and Apathy

gthelen

Interesting exercise program

My Rotary and PWP partner Jerry Iwerks brought an interesting exercise program to my attention courtesy of John Alexander, a Davis Phinney Foundation ambassador. The two spoke at the Fox Foundation event in Tampa Feb. 6.

Here’s what Alexander said in a follow-up email to Iwerks (the videos referenced are quite well done):

“The class that I have been participating in recently is called PWR, which is an acronym for Parkinson Wellness Recovery. The program began in Tucson, AZ at a neurofitness center specializing in early intervention and ongoing access to research-based therapy and fitness programming for individuals with PD.

“Florida Hospital in Central Florida became aware of the program and they scheduled a session to train an initial group of Physical Therapists to lead classes just about a year ago. A team of instructors came to Orlando last year…

“The following link shows a video describing the basic moves in the program. http://www.pwr4life.org/moves/approach/

“In addition to watching the primary video on this page, scroll down and click on any other hyperlink to a word in blue and you’ll get a good visual demonstration of the various components of the program. For example, here is a video of the Standing moves – https://www.youtube.com/watch?v=Y6Wtd13lwrc and here is one of the Sitting moves, https://www.youtube.com/watch?v=TDBVDCkkxV0

Reminder about USF PD Seminar Saturday

USF Parkinson’s Disease Educational Symposium ‪from 9 a.m. to 3 p.m. at the USF College of Public Health, ‪13201 Bruce B. Downs Blvd., Tampa. Free lunch provided. To get more information and to
Register by email; contact Jennifer Baker at jrbaker2@health.usf.edu.
My wife and I attended last year, and it was quite worthwhile.

Apathy and PD

I was enlightened by this interesting take on apathy in PDF by Dr.
Rachel Dolhun of the Fox Foundation.

“This time of year everyone and everything seems to be focused on exercise as part of a New Year’s resolution. It can be hard for anyone to get and stay motivated, but what if it seems nearly impossible? What if you have no get-up-and-go, or you’re simply not interested? You may be experiencing apathy.
“Apathy Is a Non-motor Symptom of Parkinson’s disease
“Apathy causes a general lack of motivation and interest, as well as a dampening of emotional expression. Hobbies and social activities may no longer bring enjoyment, and daily routines may require more energy. Basic tasks may be difficult to start and complete.
“Apathy can be misinterpreted as laziness, poor initiative or depression. And while it oftentimes is a feature of depression, apathy may occur on its own in Parkinson’s.
“This symptom affects up to 40 percent of people with Parkinson’s disease (PD) and is likely due, at least in part, to lack of the neurotransmitter (brain chemical) dopamine. It can impact anyone at any time in the course of his or her disease, but those with depression, anxiety or impaired cognition (memory and/or thinking abilities) are more susceptible. Older age and more severe motor symptoms also seem to put people at higher risk of developing apathy.
“Apathy Has Many Potential Consequences
“Apathy can have wide-ranging effects. For the individual experiencing it, apathy may lead to less physical activity (which can worsen already impaired mobility) and fewer social interactions (which could lead to depressive symptoms). Apathy has also been shown to correlate with a poorer adherence to medication regimens and/or response to treatment (as after deep brain stimulation surgery, for example).
“The friends and family of someone with apathy are also impacted — relationships may be stressed as loved ones take on more caregiving efforts.

“Treatment of Apathy Focuses on Behavioral Adjustments
“People with apathy usually don’t realize there is a problem. Instead, friends and family notice behavior or personality changes and bring these to the doctor’s attention. It’s important to do so because the physician can do tests and have you fill out questionnaires to figure out if the symptoms are due to apathy, depression and/or another medical condition.
“If the diagnosis of apathy is confirmed, lifestyle adjustments may be recommended:
Maintain a regular sleep and wake schedule. Go to bed and get out of bed at the same time each day. If you snore loudly, act out your dreams, or feel excessively sleepy during the day, ask your doctor if you need a sleep evaluation.
Create a schedule that incorporates physical, social and cognitive (memory and thinking) activities. List what you will do each day and at what time.
Set personal goals. Start small, with objectives you are confident you can achieve. As you reach these, you will set and accomplish bigger goals. Involve others at every step of this process — this will strengthen existing bonds and build new relationships.
Exercise. Physical activity is probably the last thing you want to do when you’re tired and unmotivated. It sounds counterintuitive, but exercise is actually helpful for apathy. Listen to your body and know your limits (i.e., stop if you feel pain, don’t push yourself to the point of exhaustion, etc.) but try to do something active every day — a short walk around the block or, if you have poor balance, stretching exercises on the floor. You might even want to look into group exercise classes — many are offered specifically for people with Parkinson’s or older adults.
“Medication options to treat apathy are, unfortunately, limited. Increasing dopamine replacement therapies (dopamine agonists and/or levodopa) is beneficial in some people but, of course, must be done carefully. Other drugs, including those used for dementia (such as rivastigmine, or Exelon) and depression (namely if the person is depressed) can be helpful in individual cases. All medications work best in conjunction with the above behavioral adjustments.
“More Research Needed on Apathy
“Clinical trials to test therapies for apathy are difficult to design and complete mainly because apathy can be hard to separate from other conditions. Additionally, the diagnosis of apathy relies on patients reporting their own symptoms and doctors doing tests to rule out other diseases (i.e., there is no blood or other test to make a specific diagnosis of apathy).
“Clinical trials to date have shown that both dopamine agonists (such as rotigotine, or Neupro) and non-dopaminergic medications (like rasagiline, or Azilect) can be helpful in some people. Additionally, small studies of non-pharmacologic interventions — exercise, cognitive behavioral therapy and repetitive transcranial magnetic stimulation (which delivers magnetic pulses to specific areas of the brain) — have shown an improvement in apathy. Further research is needed, though, to gain a better understanding of apathy and develop better treatments to target it.

Parkinson's Disease, Support Groups

Fox FoundationThrows a Grand Tampa Bay Party

gthelen

The Michael J. Fox Foundation threw a grand party Saturday for Tampa Bay Area people with Parkinson’s. They spared no expense for the estimated 700 to 1,000 Parkies and their care partners who gathered at the downtown Tampa Hilton hotel.

Breakfast was everything you could ask for, and the box lunches were top drawer. They even provided parking vouchers worth up to $10 each.

The main and breakout sessions were informative an interesting, even if little information ground was broken. The gathering allowed attendees to interact with care providers in the area, ranging from USF research initiatives, new cycling programs at the South Tampa Y and the relatively recent and successful Rock Steady Boxing program in Largo. In the largest sense, the community of Parkies and their support organizations was established or at least reinforced.

The plenary and breakout sessions covered the familiar topics of how varied Parkinson disease symptoms are, how you find and interact with a movement disorders specialist, what research is in the works and the role and stresses for caregivers.

The all-day event had both funny and strange moments. Dr. Robert Hauser surveyed the vast audience with a wry smile and said what a wonderful gathering this was of future participants in his many research studies at the USF Byrd Center for Parkinson’s Disease and movement disorders. One patient panelist mentioned that because of her medications she sometimes found herself asleep while stopping at red lights. There was an audible gasp from audience members who were astonished that she was still driving

The messages were familiar ones. Get engaged. Get educated. Get involved. Don’t let the disease own you. You have to be your own best advocate.

The news for me involved the Fox program named Partners in Parkinson’s. I was unfamiliar with even its existence. Its goal is a worthy one: filling that gap after diagnosis with an effective support network.

Here’s how they describe themselves: “You are not alone; there are many sources of information and assistance to help you chart your own course for living well with Parkinson’s disease. Connecting Parkinson’s patients, families and caregivers with these resources is the goal of Partners in Parkinson’s. We encourage you to take advantage of the tools we offer, all of which you can access at your own pace from the comfort of home:

“A first- ever online tool to find a movement disorder specialist (created in collaboration with the International Parkinson and
Movement Disorder Society).
The opportunity to connect with an advocate by phone for one-on-one advice and support.

“An educational website with information about Parkinson’s disease, including a downloadable Parkinson’s disease guide.

“”Whether you are newly diagnosed, have been living with Parkinson’s for years or are caring for someone with Parkinson’s, we hope to help you discover the benefits of team.
To do to take advantage of all Partners in Parkinson’s resources visit http://www.partnersinparkinsons.org.”

The Parkinson’s disease advocate is described this way: The person has 1. Skills in educating you about Parkinson’s disease and progression. 2. Knowledge of educational resources for Parkinson’s disease. 3. Suggestions for helping you discuss your symptoms with your doctor.

The program sounds very promising. I intend to learn more about it and pass that along in a future post. One of my questions will be does a person have the same advocate throughout or is it a rotating group you will interact with? How do Advocates know what local resources and providers to recommend?

My larger question has to do with asking the person just diagnosed with Parkinson’s who is at a low ebb emotionally and educationally to have the the wherewithal to seek out the Advocates program. That aside, I am very impressed with the ambitiousness of this venture.

On behalf of those of us who attended, thank you Michael J. Fox Foundation for a very worthwhile day.

 

 

Parkinson's Disease, Parkinson's exercise, Uncategorized, USF

Tampa Connector Update

gthelen

Tampa Bay Helpline

I wrote again about the need for a Tampa Bay Connector/Helpline/Hotline to answer very specific and granular questions about patient needs in PD. You will recognize some of the prose from earlier posts. It appeared Sunday Jan. 24 in the Tampa Tribune. Those of you with social media, please consider promoting it. Maybe we can create a small bandwagon in its favor and get institutional help. My bet is on Florida Hospital-Tampa, the former University Community Hospital, stepping up. A well-placed neurologist tipped me that something IS going to happen SOMEWHERE and to stay patient.


Exercise

Here’s another strong vote for hot, sweaty exercise as a key component of your exercise program.

I am feeling rejuvenated by my regimen of three days of Rock Steady Boxing and two days of spinning at the South Tampa Family Y. That spinning class needs and deserves more participants than it has now. See my earlier post for details.

Anxiety

Anxiety is a major complaint of Parkies, but little research is being dome on the topic. Here’s a valuable webinar on the topic.

http://event.netbriefings.com/event/pdeb/Archives/pdanxiety/register.html


Remember to RSVP Fox and Hauser Seminars

Tampa Bay hastwo strong PD seminars upcoming in February.: Fox/PDF on the sixth and Hauser on the 20th. Remember to sign up now to secure a spot.

http://partnersinparkinsons.org
Hauser 2016 seminar

Parkinson’s Disease

Educational Symposium

Presented by:

Robert A. Hauser, MD, MBA

Professor of Neurology, Molecular Pharmacology and Physiology

Director, USF Health Byrd Parkinson’s Disease and Movement Disorders Center of Excellence

SAVE THE DATE!

Saturday, February 20th, 2016

Time: 9:00 am- 3:00 pm

Location: University of South Florida

College of Public Health

13201 Bruce B. Downs

Tampa, FL 33612

Auditorium 1023 A-B

 

 

 

 

 

 

 

 

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Registration Form

 

Name: _________________________________   Number of People Attending: ___________

Address: _______________________________

_______________________________

Phone: _______________________   Email Address: _______________________________

 

 

 

For more information or to register by email, please email Jennifer Baker at jrbaker2@health.usf.edu. Register by mail, send to 4001 E. Fletcher Ave, 6th Floor, Tampa, FL 33613. Due to high call volume, phone registrations will not be accepted.
LUNCH WILL BE PROVIDED. SPACE IS LIMITED