This call to action by Michael Okun says it all about personalized treatment for PD.
Two interesting pieces just came across my electronic desk. One involves dyskinesia treatment. The other concerns growing evidence of the role of inflammation in PD.
They are worth attention.
I wondered this as I read the JAMA Network piece on best practices in PD care: “Who is this fluent writer plumping interdisciplinary PD care?” NEW recruit to the cause, I murmured to myself.
Got to the author’s name at the end. No other than Shuffling Editor Hall of Famer, UF’s Michael Okun.
I owe Tim Hague Sr. an enormous thank you. The Canadian Parkinson’s advocate/educator/motivator helped me rethink my relationship with the various communities in my life.
Hague was a featured speaker at the Davis Phinney Foundation’s Victory Summit last week in Punta Gorda. He captivated the more than 800 Parkies and friends with perseverance stories about winning the first Great Amazing Race Canada with son Tim Jr.
Their reward was $250,000 cash, plus automobiles and free air travel. The perseverance required to win had everything to do with Tim’s PD-related memory and organizing challenges.
To hear Tim tell his story, go to http://www.timsr.ca/watch-tim-speak/
Tim often referred to the communities in his life: family, his hometown Winnipeg, fellow Parkies, his health care team.
He got me to thinking about the communities in my life: my immediate and extended family; PD SELFers; Rock Steady Boxing compatriots; PD support group members; fellow Florida newspaper editors; the golf group I once belonged to; college friends; high school friends; journalists I worked with at three Carolinas newspapers. The list goes on and on.
Each community commands my attention, requires nourishment and provides me support in large and small ways. I count on them to help fuel my perseverance in pushing back at my Parkinson’s condition.
Davis Phinney Foundation is also about communities and individuals in those communities who serve Parkies. The foundation’s primary mission is to salute people who persevere with their PD and serve their communities. Until Friday, I had not understood how Davis Phinney stands apart from other PD organizations in this way.
I salute the foundation and their speakers, such as Tim, for the large contribution they are making to the lives of those of us with Parkinson’s.
I treasure the work of the late Dr. Tom Graboys, esteemed Boston cardiologist.
I reread his memoir about PD (“Life in the Balance”), and was riveted by two words: diminishment and control.
Graboys’s major PD undertakings were managing his diminishing capacities and keeping control of his life.
Those are my issues, too.
I give you a sampling of my tactics to counter PD’s relentless drive to diminish, and wrest control, of my life.
- Loss of sensation in dominant right hand: go left-handed. (Neuroplasticity at work)
- Clumsiness when eating (dropsies): substitute spoons for forks.
- Can’t remember where I left keys and like valuables: tether items to a constant in life. In my case, a small leather pouch that’s always at my side. (Boy Bag)
- Leaving home without vital documents (wallet, driver’s license): always have them in shoulder bag (Man Purse), which contains Boy Bag in marsupial fashion.
- Driving uncertainty: get technology loaded car (GPS, blind spot displays, radar and cameras everywhere); stick to middle lane; U-turns rather than left turns into four-lane roads; care partner drives in unfamiliar areas.
- Emotional volatility (emotional incontinence, in a Parkie friend’s unforgettable rendering); think twice (maybe 10 times), before acting on impulse (binge shopping, gambling, etc.).
- Thanks to a nOH-like condition, peeing every 30 minutes, urgently: always know (and plan around) location of nearest toilet; wear quick-exit gym pants; stow your pride and employ adult diaper for trips.
- Difficulty moving from sitting to standing: use chair with arms rather than deep sofa; employ booster toilet seat.
- Life in the slow lane (bradykinesia): add 30 minutes (or more) to a planned task (packing for trip, gym date, doctor visit).
- Unstable balance: forget cane or walker; use balance sticks. Sexy and pleasantly eye-catching (“Cross Country skiing in Florida! How neat of you!”)
- Forgetting must-do tasks: place visual reminders in front of you. For example, monthly investment report as reminder to call investment advisor.
- Loss of multi-tasking ability: KISS principle always. (Keep it simple stupid) Rely on care partner for help.
- Leaving stuff in and around car: rigid discipline to ALWAYS check roof, door locks, rear hatch and ground around vehicle.
- What-to-wear-today dilemma (due to not remembering your calendar obligations): choose clothes night before. For this once well-dressed guy, this is a new challenge. I need garb that fits the day and is quickly and easily removed, thus assisting me in avoiding the ultimate public embarrassment: pissing in one’s shoes.
I am spending time at New Smyrna Beach this month. The vacation break, while soothing, is taking away my exercise routines at Rock Steady Boxing and interval cycling.
I received an email a few days ago that has very nicely filled my PD exercise void. It’s from Jim Stoll, a man I don’t know except through email correspondence. It lays out an exercise program related to the “Big Program” I took at Florida Hospital-Tampa shortly after I was diagnosed in 2014. It’s named PWR! (Details to come.)
First, about Jim Stoll. He describes himself as a 69-year-old man with advanced PD. He continues: “I was diagnosed … in 1970 after a carbon monoxide poisoning incident. Things did not get real bad till 2014, 44 years later. Now my body just quits listening to my signals. I also have sacroiliitis which makes walking of more the a few hundred feet quite painful.
“I had MoveBig therapy once about a year ago, and it helped some. Then I learned about Parkinson’s Wellness recovery PWR!, which, from what I understand, is MoveBig version 2.
“I am very excited about PWR! It implements research-based neuroplasticity-principled programming in rehab and fitness settings
“PWR! is centered around four moves –up, rock, twist and step –and is done in five positions prone (lying face down), supine (lying face up), sitting, standing and all fours.
“I have been doing the PWR! moves in the supine position for about a month. Both my wife and I have noticed a definite improvement in my ability to walk.”
Jim provides YouTube URLs that demonstrate the moves. Some of them are part of of the Rock Steady floor routines I know very well.
RESULTS BASED: PWR! Training – Unfreezing for an individual with Parkinson disease with severe freezing: https://www.youtube.com/watch?v=bz_dQnvuNfY
A LOOK AT THE PWR POSITIONS
PWR! Moves Positions – Standing https://www.youtube.com/watch?v=Y6Wtd13lwrc
PWR! Moves Positions – Sitting https://www.youtube.com/watch?v=TDBVDCkkxV0
PWR! Moves Positions – All 4’s https://www.youtube.com/watch?v=oXUzOmfPwD8
PWR! Moves Positions – Supine https://www.youtube.com/watch?v=UOVcVPUGEHM
PWR! Moves Positions – Prone https://www.youtube.com/watch?v=ZFhk73ydmto
PWR Moves! Let’s Get Moving! (group exercise session) https://www.youtube.com/watch?v=yPspiGqHinA
Introductory Breath Flow for Parkinson’s Wellness Recovery (PWR!) https://www.youtube.com/watch?v=POiAkJeFSRs
AN EXPLANATION OF THE PWR PROGRAM
PWR! Gym Social Week 1 – Em-PWR!-ment https://www.youtube.com/watch?v=H2Pcbfqt7Sc
PWR! Gym Social Week 2 – PWR! Nutrition https://www.youtube.com/watch?v=6Amei5OkK1I
PWR! Gym Social Week 3 – PWR! Teamwork https://www.youtube.com/watch?v=GhBIXwrQ4eU
PWR! Gym Social Week 4 – Optimizing Your Meds with PWR! https://www.youtube.com/watch?v=B6ZlIKaBQHo
PWR! Gym Social Week 5 – PD Specific Exercise https://www.youtube.com/watch?v=yMsUKsl4G_M
PWR! Gym Social Week 6 – Big, Fast, PWR!-ful https://www.youtube.com/watch?v=SdrPPUFXooU
PWR! Gym Social Week 7 – HOW to Exercise with PWR! https://www.youtube.com/watch?v=6w6a3SBuTVo
PWR! Gym Social Week 8 – PWR!Moves Intro https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 9 – PWR! Up with Emily https://www.youtube.com/watch?v=r2xDr1AhaeU
PWR! Gym Social Week 10 – PWR! Rock with Jennifer https://www.youtube.com/watch?v=41mH1dCZ9Pk
PWR! Gym Social Week 11 – PWR! Twist with Emily https://www.youtube.com/watch?v=GELblae395s
PWR! Gym Social Week 12 – PWR! & Brian Grant Foundation’ Power Through Project’ Trailer https://www.youtube.com/watch?v=DEOGY0-9xvk
PWR! Gym Social Week 13 – PWR!Step with Jennifer https://www.youtube.com/watch?v=oPxIdrMq4Ik
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 email@example.com.
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.
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.
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 firstname.lastname@example.org.
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.