Must Read, Parkinson's Disease

A GREAT TAKE ON PD NON-MOTOR CHALLENGES

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

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MOVING DAY 2016

MOVING DAY 2016

I am participating in 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.

The event will be 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 team is Rock Steady Boxing Tampa Bay.

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. The program was funded in part by contributions to last year’s Moving Day.

Our team will demonstrate Rock Steady techniques at this year’s event.

 Please consider being a part of my team or sponsoring me, and I encourage you to get your friends, family and coworkers involved. For more information visit
http://www.MovingDayTampaBay.org

A SECOND TAMPA Y OFFERS INTENSIVE CYCLING FOR PARKIES

The Bob Sierra YMCA in Northdale is starting the Pedaling for Parkinson’s program, which is open to Parkinson’s patients and caregivers. It joins he South Tampa Family Y in offering the program. The Y is at 4029 Northdale Blvd. Phone number
(813) 962-3220

You will need a medical release signed by your neurologist or primary car physician.

The classes are twice a week, on
Tuesdays and Thursdays at 11:00 AM and last for 1 hour.

It is free for the first 8 weeks. If you have Silver Sneakers the program is free after the eight weeks. Otherwise, a Y membership is required and covers the program’s cost.

I do the South Tampa program and find it highly effective in relieving PD symptoms. I do it in conjunction with Rock Steady Boxing in Largo.

Contrary to other reports, the New Tampa Y has no plans to start the cycling program.

PDF’s NICE TAKE ON EXERCISE BENEFITS

This piece is authoritative and worth your time reading.

http://www.pdf.org/spring16_exercise?utm_source=newsletter&utm_medium=email&utm_campaign=general

GIL AND SHERRY HARDEN GET SELF-EFFICACIOUS (BUT IT COULD BE WORSE)

Sherry Harlan — longtime USF PD research associate and key member of Dr. Robert Hauser’s team—and I have been chosen to learn “self-efficacy” skills and apply them to the support of newly diagnosed Parkies.

The sponsoring organization is the Parkinson’s Disease Foundation. PDF discusses and defines self-efficacy:

“What happens when a person is diagnosed with Parkinson’s?
Many people are handed a diagnosis with very little guidance on what to do next.

“But the diagnosis is life changing. Facing life with a chronic progressive disease means facing changes to health, relationships, family life, employment and finances.

“Research tells us that when people are given the resources to cope with these changes, they are empowered to take an active role in managing PD, leading to better health and quality of life.

“PD SELF (Self-Efficacy Learning Forum) is an innovative disease management program that offers this approach. It was developed in 2013 by Diane Cook as part of a clinical trial sponsored by the Colorado Neurological Institute.

“Based on the psychosocial theory of self-efficacy, PD SELF helps people newly diagnosed with PD to create a personalized approach to managing their disease. Self-efficacy is the confidence a person has in his or her ability to influence an outcome or be successful in achieving a result.

“ Self-efficacy beliefs determine how people think, feel and motivate themselves. It is increasingly used in health care for its effectiveness in helping people to adopt healthier behaviors.
A central focus of PD SELF is to help people strengthen self-efficacy beliefs, thereby positively influencing the management of their disease. At the end of the first clinical trial testing this approach, researchers found that PD SELF:
Improved mental health and well-being of people
with PD and their care partners.
Decreased participants’ stress, anxiety and depression and improved sleep.
Improved participants’ emotional well-being, even when PD (or general health) declined.
Led to long-term improvement in the areas above, with changes observed for as long as one year after the clinical trial ended.
Led participants to become more active in the Parkinson’s community, for example through increased enrollment in clinical trials.”

Parkinson's Disease, Support Groups

SHIP OF THE BRAVE

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.