Shake, Rattle and Roll

Spaced Out in Denver

By GUEST BLOGGERS:  Charlotte Stall and Julie Slater, PD Advocates and Writers in Denver, Colorado, on behalf of the J P Parkinson’s Book Club

When Julie and I first met with Kate to discuss being guest bloggers, our goal was to part share our experience and knowledge about how to start and lead a Parkinson’s Reading Group.  About a year and a half ago, Julie and I had done just that.  We felt like we needed a way to share the tremendous amount of available information about this disease.  We envisioned a group that would provide support to PD folks in a format that was different from the terrific, already established support groups in our area.  We knew we had both personally benefited from our affiliations with our local support groups during the initial years of our diagnosis. Now felt there was a need for something like a “next step” for those of us who had been living with PD for a while.   We decided not to have guest speakers.  Rather, we would be the leaders, and it would be our learning and sharing with each other that would provide support.

However, at one of last week’s beloved exercise classes, we learned that we probably would have to find another place to exercise.   Our dedicated teacher had searched high and low to find our current gym, but the gym had recently informed our teacher that they were unable to continue to provide the weekly, free spot for us.  “Not again “and “not another move” was what we were hearing. Disappointment was the feeling in the air.  We have now been told that our exercise class is indeed cancelled until further notice. Exercise is so important to our well-being, so we choose to publicize our plight and search for a new space as the topic for this blog submission. The book club blog post will have to wait for the future.

Here’s some background about the situation in our town:  Much of the space used for a variety of classes and events is donated.  We appreciate the donated space and the dedication of the professional teachers, often volunteers, who teach the classes. We are fortunate to have a variety of programs in the Rocky Mountain Region.  We have boxing, high intensity exercise, dance, yoga, and Tai Chi classes. There are so many exciting and valuable programs in our area that we probably have missed some activities in this list!  Depending on your insurance plan, you might also be lucky enough to have your insurance cover a membership in a local health club.  Still, there is a need for more spaces and ventures. As a PD group, we are a growing community.  We need more classes and more instructors who are trained to teach those of us who have PD.

We know that exercise is as important as our medications.   We try to make it a priority in our lives.  If you are reading this blog, but don’t know anyone with PD, you may think of someone with PD as old, hunched over, shuffling, and barely managing chair exercises.  If this is the picture you have of someone with PD, we want to politely let you know that you are wrong!  Those of us with PD are otherwise healthy and active individuals, aged somewhere between 40 and 80 years old. Many of us continue to hike, ride bikes, run, and jog in local races, ski, and snowboard.  If we have had to stop with one physical activity, we look for other avenues to keep our bodies moving.  We use the wide-open spaces of Denver and Colorado for exercise, yet also benefit from, and enjoy our group exercise classes and the informal camaraderie and support participation in these classes provides.  We are motivated to make a difference in how this progressive disease impacts us.

So, if you know of an exercise space centrally located in the Greater Denver area that is available to host exercise classes, please let me know!  Contact me at 303-803-0399 with any leads or information. 

Charlotte Stall

P.S.  We do know of a wonderful place - subdued, very functional, friendly staff, FREE use of the facility and FREE parking. It is the facility where we meet for our PD reading club.  Too bad they don’t have a gym!   But stay tuned.  You can read all about the JP Reading Club in a future blog post.

The Label “Exercise for Parkinson's" May Do More Harm Than Good

Opinions vary as to what type of exercise is appropriate or beneficial for those with Parkinson’s Disease—everything from gentle yoga to high intensity aerobics, chair exercises to boot camps, not breaking a sweat to forced exertion with continuous sweat.

Our Australian correspondent and guest blogger, Neil Sligar, has developed an approach that has worked well for him for nearly 13 years. 

The following is Neil Sligar's opinion:

 

I rarely publicize my athleticism with Parkinson’s, fearful that the general public may think the condition less nasty than it is.

I particularly welcomed your remark about “exercise for Parkinson’s” and how you are more comfortable exercising (“moving” may be a preferable description) with the wider world.

My training regime was commenced in the year 2000 for overall health and because I enjoy it. It continues for that purpose. It’s conducted in the company of cheery young people who lift my spirits. It pursues little improvement targets rather than ambitious goals. I aim to finish each session feeling around 8 on a scale of 1 (barely any effort) to 10 (exhaustion). My overall mantra is “Do your best. No-one can do better.” I can accept that a 25 year old man or woman may go faster and further but I’d be very cranky if they’d worked out harder than me.

I’m not into bravado. Safety is paramount. I’m likely to be found exercising alone but if using weights, always within sight of someone else.

To me, exercise means flexibility + aerobic (puffing) + strengthening.

Some days I feel good. Other days may be terrible. I turn up for training regardless of my condition on the day. Sometimes when feeling terrible, I perform at my best. During my June 2011 video, I felt at my worst and was very shaky and rigid. Yet with encouragement from fitness instructor Danielle, I pulled out one of my better efforts. (See link to video.)

My few encounters with “exercise for Parkinson’s” have left me feeling patronised by “experts” who seem reluctant to accept that, despite the condition, I’m faster and stronger than most men of my age. The explanation for my capability is very simple. I train hard and assume that all things are possible until proven otherwise. Others with PD run marathons or cycle long distances or climb Mount Kilimanjaro or lift heavy weights.

Before diagnosis we were a heterogeneous bunch with vastly differing habits and preferences. Now we live with PD, at various stages of the condition, why is it that we should be corralled together for “Exercise for Parkinson’s”?

Some Parkinson’s websites counsel us to be “assessed” by a physical therapist before starting an exercise program, then supervised in exercises specifically focused at Parkinson’s. Other websites counsel us to ask our doctors what exercises they recommend. What do they know about exercise? Does their medical training include anything to do with the topic? The upshot too often is that PWP are informed of an “exercise for Parkinson’s group” in which PWP are brought down to that minimal level at which all PWP can participate. Some PD exercise groups are conducted sitting down and use soup tins as weights.

Why not begin with the assumption that we are not handicapped until evidence is found to the contrary? Then treat that specific shortcoming rather than consign someone labelled “Parkinson’s” to a group for those of lower physical capacity?

Some people wish to cluster with others diagnosed with PD. Others, like me, wish to remain fully participating in the wider community. Some join dance classes for those with PD. Others prefer to dance with the wider community.

Over fourteen years following diagnosis of Parkinson’s disease, my fitness level is far superior to what it was prior to 2000.

Learn more about Neil Sligar from:

Video and PDF of Neil’s presentation to the Parkinson’s Australia conference in Brisbane, July 2012

http://www.parkinsonsconference.com.au/presentations2012.php

Video shown at the conference is a four minute abbreviation of a twelve minute video produced in 2011.

http://www.youtube.com/watch?v=R_-nRQmO8ko

Read more from Neil Sligar at:

Parkinson's Disease and Intense Exercise

http://katekelsall.typepad.com/my_weblog/2010/01/parkinsons-disease-and-intense-exercise-neil-sligars-10-year-experience.html

An anonymous piece written by Neil Sligar for the Parkinson’s NSW annual report in 2012 http://www.parkinsonsnsw.org.au/assets/attachments/documents/AnnualReport_2012.pdf

 

Disclaimer: Those contemplating a vigorous exercise program should first ask a medical practitioner to check their overall general health.

 

Ouch—That Hurts!

  I hadn’t realized that her words were still hurtful and that I had continued to feel wounded.

This past summer, I participated in an exercise class, led by a Physical Therapist and that was geared to people with Parkinson’s. In the middle of one of the classes, the instructor ran over to me, grabbed my right hand and said in her loud outside voice, “I hate that shaky right hand.” I was shocked and without a quick comeback, responded in my whispery inside voice, “I hate it too.” There was a pause. She then said in a quieter voice, “you know you can stop the tremor, but just temporarily.” Of course, I knew that I could stop the tremor if I focused on it 24/7, but I chose to focus on living life instead of scrutinizing my shaky paw.

I took the coward’s way out and simply withdrew from the class. Being preoccupied with “ouch—that hurts,” I missed that teachable moment.

I wish I would have said to her that if she wants to work with people with Parkinson’s, she’d have to get over her hatred of the shaky hands of her patients. She would encounter a lot of persons with shaky limbs if she chose to specialize in Parkinson’s.

I would have told her that we also hated our shakiness, that we didn’t choose to be shaky, and that it was exhausting for us to attempt to cover it up from people like her.

I also would have said that her approach of singling me out for my shakines was hurtful, not helpful.

I can’t imagine having this experience in an exercise class of everyday folks. As a result, I’ve decided to avoid exercise classes geared to those with Parkinson’s and only attend exercise classes for those WITHOUT Parkinson’s.

Changing Your Brain

By Sharon Kha

Copyright 2011

A thin slice of new moon hung in the chill of the Arizona morning. Some of the people lined up at the trailhead had canes or walkers, and most of them had shaky hands and took short, lurching steps.  A wisp of the aroma of frying bacon was in the air.  Breakfast at the Rancho de los Caballeros dude ranch in Arizona wouldn't be for another hour, but the group at the trailhead was too excited to eat.  They all had Parkinson's Disease or were married to someone who did, and they all wanted to change their brains.

Pat Bemis wasn't looking forward to the week ahead.  Frankly, she was saturated with the demands Parkinson's made on her and her husband for the past 22 years.  She wanted a manicure, a pedicure and a good book.

Becky Farley was everywhere at once; shedding energy like sparks from a comet. "Plant your feet wider, PWR! UP  and you'll be steadier," she'd say. "Good, good, that's better." Her arms swung in wide arcs as she walked. "Activate!" she said. "Exaggerate your movements!"

Gardner Bemis, Pat's husband, shuffled to his place in line, hunched over and moving slowly. He used to be a neonatologist until his tremor got too bad. Now he lives in Steamboat Springs, Colo.  He had read about research done in Japan where newborns with brain damage had trained other parts of their brain to take over some of the lost functions.  He had seen remarkable recoveries in newborns with his own eyes.

"With Parkinsons, the brain pathways are still there," he said. "We haven't had a stroke or an injury to the pathway-we just need more of a particular chemical. It seemed to me that retraining the brain to compensate for PD should be relatively easy."

Recent basic neuroscience research in animal models of PD (rodents and non-human primates) suggests that exercise can halt or reverse motor symptoms and "change the brain."  The exercise was shown to increase levels of dopamine if started early enough.  But, even in those animals that had already lost 50-60% of their dopamine cells to Parkinson disease and that had obvious gait and balance problems  (as is more like the human condition at time of diagnosis), the exercise helped the remaining neurons work more efficiently.  So the brain learned how to do more with less dopamine and they walked and balanced better!   For example, there were more dopamine receptors, increased amounts of dopamine were released and it stayed around longer in the place where it was needed, and noisy/inefficient circuits were partially restored (Vuckovic MG, Quanzheng L, Fisher B, Nacca A, Leahy RM, Walsh JP et al. Mov Disord 2010;25(16):2777).  Studies suggest the exercise may bathe the damaged neurons and circuits in the brain with nutrients, like growth factors, which makes them sprout new connections and survive for longer.  It appears that brain change and reorganization occurs primarily in those “activated” circuits!  Giving support for the old adage:  Use it or lose it! 

For Martin Buckley, a Colorado Attorney, the "runner's high" when your brain is bathed in endorphins was a familiar sensation.  He likes to push himself but he thought he's never be able to push himself to runner's high again.  He was wrong. By the end of the week he was walking on a treadmill sideways and backwards and the runner's high was back.

Bemis, Buckley and 26 other people with Parkinson's put their brains through a veritable boot camp of forced use exercise that generated plenty of endorphins during their week at the dude ranch.  They started with a Parkinson's Wellness Recovery (PWR!) walk every morning, attended daily PWR! MOVES™ and PWR! Circuit classes that target PD-specific symptoms and movement deficits, went to lectures, and learned to do Yoga, Tai Chi, and meditation to decrease stress and its negative effects.  About half way through the week, both Gardner and his wife noticed that his posture had improved significantly, and he wasn't shuffling any more.  "I had been telling him for years to stand up straight," Pat said. "But Becky taught him what he had to do so he could stand straight." “PWR! UP”

Gardner noticed that his colleagues were experiencing similar changes. Two 80-year-olds who arrived with walkers were walking without them when they left. One woman discarded her cane. Another man walked down the aisle backwards to get his certificate - just because he could.  Brain change was a fact.

NeuroFit NetWorks is a non-profit organization founded by Becky Farley, PhD, MS, PT., and this was their first weeklong PWR! Retreat. "My vision is to build a community that recognizes and implements exercise as a physiological tool to help protect, repair and optimize brain function," Becky said.

She has already implemented her vision in her hometown of Tucson, AZ, where she opened a PWR! GYM.  People with Parkinson's can come every day and do exercises that are specifically designed to address particular physical deficits that are common to Parkinson's disease and improve the quality of their lives. She believes that the forced use repetitive practice of whole body functional movements that are most difficult for people with PD – when performed with amplitude, vigor and mindfulness will restore lost function, balance, and mobility from muscles and circuits made weak from inactivity and nonuse, slow motor deterioration, and basically make people happier. She also believes that continuous access to exercise that begins at diagnosis may even slow disease progression.  

"This isn't like brain surgery or meds," Pat Bemis said. "I could see the changes incrementally day by day-not only physically but emotionally. It was a "can do" approach after all these years of being told it is a progressive disease.  I felt like I had been to Lourdes in Arizona-and I'm very skeptical about things like this. I'm a nurse."

Gardner Bemis agrees.  "Too many doctors think that we have a degenerative disease so they pat us on the back and send us on our way and say 'Come back in three months.'  Becky has found a way to look at specific symptoms and design a plan that trains the brain to compensate for those particular conditions."

As important as the change in fitness was the change in attitude.  One evening, Martin and Debbie Buckley joined the rest of the group on a hayride to the desert.  They ate barbeque and watched the space station come overhead in the incredibly dark desert skies.  "It was very emotional," Martin said.  "There was a change of mind set as the week went on and you found you were able to do things you didn't think you could do.  We bonded, and we left happier."

People in Colorado this summer will have two chances to try Dr. Farley’s ideas for themselves. Clinicians and health and fitness professionals can attend a workshop either July 21-22 or July 23-24 at the Swedish Medical Center in Denver to learn Becky's techniques and become PWR! Exercise Experts.  People with Parkinson's are invited to join the PARKINSON EXERCISE REVOLUTION by attending a lecture at the Colorado Community Church on July 20. Details for both events are available on the NeuroFit NetWorks (www.nfnw.org) or by calling NeuroFit NetWorks at 1-520-270-9990.
    
Oh yes…. Pat Bemis got her pedicure.

 

 

 

No Limitations for Neil

Like to see how Australian, Neil Sligar relaxes? Toward the end of four days each and every week, he puts on a T-shirt, shorts and pair of jogging shoes and heads for the gym. Believe it or not, indoor rowing and cycling at unusually high speed for a fellow of 65 years are easy compared to getting dressed or holding a cup of coffee. An oddity of his Parkinson’s is that as his exertion increases, the Parkinson’s abandons him.

Neil works out in the company of fit young people. No one says “Neil, you have Parkinson’s. You’d better take it easy." No one would dare.

Check out the video of Neil's usual exercise regimen at:

http://www.youtube.com/watch?v=R_-nRQmO8ko

Way to go, Neil.

 

Songbirds Take Flight

 I was tired of exercising my stiff Parkinson’s body and lifeless Parkinson’s voice. It was tedious, repetitive and boring. I dreaded it and avoided it. It wasn’t fun until…

 

I discovered speech-language pathologist, Mary Spremulli and her Voice Aerobics^TM program and voice strengthening products.

 

In particular, I enjoy Mary’s latest product, Voice Aerobics^TM Songbirds CD with speech and voice exercises set to music.

 

Songbirds CD is LIVELY. Singing along with Mary’s energetic voice is contagious. My voice becomes ENERGIZED too.

 

It is FUN to practice the exercises, never tedious or boring.

 

My voice DANCES with the CD's waltz, tango, bossa nova and samba music.

 

Songbirds CD is UNIQUE, one of a kind and creative.

 

Mary’s passion and enthusiasm toward fulfilling her MISSION* is clearly demonstrated in Songbirds CD.

 

*MiSSION of Mary Spremulli, MA, CCC-SLP:

To enlist individuals in their treatment and help them to express their personality through voice. To educate and empower.

 

To learn and read more, visit:

Website: www.VoiceAerobicsDVD.com

Blog: www.VoiceAerobicsDVD.blogspot.com

Parkinson's Disease and Intense Exercise: Neil Sligar's 10-Year Experience

January 2010

No-one should commence strenuous physical activity without first checking with a medically-qualified practitioner that it’s safe to do so.

Parkinson’s Disease and Intense Exercise: My 10-Year Experience

By Neil Sligar, Copyright © 2010

My Parkinson’s disease was diagnosed in mid-1998. I’ve exercised vigorously since January 2000. Kate Kelsall has invited me to set down my experience and to remark, as a person living with Parkinson’s, on recent research findings about benefits of intense exercise for people like me.

“Exercise” is universally recommended for those living with Parkinson’s disease. As to what “exercise” is best, you find it can be anything from tai chi to running depending on the website. Some therapists favor treadmill and stationary bike. Others argue against treadmill and stationary bike on the basis they remove any voluntary element from the activity. There’s no agreement.

There’s been a tendency on Parkinson’s websites to refer to people living with Parkinson’s (PWP) as if we are all invalids. We’ve been advised to avoid strenuous activity, to rest if fatigued, not to exercise within two hours of bedtime. These messages have been challenged by research results during the past few years.

Some recent research findings on exercise and PD

Dr Beth Fisher and Dr Jeanine Yip (both University of Southern California) in 2005 on the National Parkinson’s Disease Foundation website described a “new paradigm.” Drs Fisher and Yip asserted that the benefits of exercise for people living with Parkinson’s (PWP) are positively related to exercise intensity. They outlined the traditional approach of physical therapy, helping people to compensate for symptoms, and contrasted this with an emerging approach of generating neuroplasticity through intense exercise. This approach had been successful with stroke and brain injured patients. Why not Parkinson’s disease? Results had been positive with mice.

The University of Southern California turned to humans in its research into exercise intensity. Would the positive findings with mice be replicated? Dr Giselle Petzinger (USC), addressing a conference convened by the Houston Area Parkinson’s Society in April 2009, announced the result in her opening remarks: “We all know that exercise is helpful to good health. We also know that it is good for the heart and the muscles. But can it change the brain, and might these changes make an impact on Parkinson’s disease (PD) symptoms?

The answer to both of these questions is yes.”

Dr Petzinger concluded “In the meantime, we know the following: intensive exercise can help people with PD move more normally, and research is beginning to reveal how it reconditions the underlying brain circuits.”

http://www.pdf.org/en/edu_events_texas

Dr Jay Alberts (firstly at Georgia Tech and later at the Cleveland Clinic) has noted that, when a PWP applies a bike pedaling speed of 80rpm – 90 rpm for at least 40 minutes, symptoms may be relieved for up to several hours. He’d first observed this by chance in 2003 while riding tandem across Iowa with a woman who had undergone deep brain stimulation. It is Dr Albert’s view that PWP can’t “normally” by themselves pedal beyond 40rpm - 60 rpm. Consequently, a PWP is “forced” to the required speed by a more athletic person riding tandem. An alternative would be a motorized bike, overcoming the need for recruiting a trained cyclist. Dr Alberts concedes that the same effect may be achieved from treadmill running while wearing a harness although he notes that running is more difficult for PWP than cycling.

http://katekelsall.typepad.com/my_weblog/2007/06/pedaling-past-p.html

http://www.wellsphere.com/aging-senior-health-article/forced-exercises/905650

http://www.cleveland.com/medical/index.ssf/2009/10/cleveland_clinic_summit_names.html

I’ve been surprised while preparing this article at how much research evidence was available during the 1990s indicating the capacity of PWP to exercise at higher intensity levels than commonly assumed. Why didn’t this evidence trickle down?

Hirsch (University of North Carolina) and Farley (University of Arizona) in the European Journal of Physical Medicine of June 2009 lamented that “many clinicians and communities remain unaware” of scientific literature underlying exercise-induced brain repair….”

http://www.ncbi.nlm.nih.gov/pubmed/19532109

My experience

I’m a 64 year old Australian. My height is 179cms (5 feet 10 inches), my weight 86kgs (189lbs.) Diagnosed in mid 1998, I have significant off-medication tremor and rigidity, mainly on my right side, some slowness of movement in activities of daily living, and no balance problem. Rigidity caused me in 2001 to change from writing right-handed to writing left-handed. My left hand is now also troubled by rigidity and tremor but not to the degree of my right hand. My posture seems unaffected.

I take 300mg/day Sinemet, 300mg/day Stalevo, 1.5gm/day Sifrol (Mirapax in the U.S.). My total l-dopa intake has remained the same since 2003 although prior to 2008 it had been through Sinemet alone. I take no supplements. I have no other medical conditions. I run a business from a home office.

January 11, 2010 was not only my 64^th birthday. It was the tenth anniversary of embarking on strenuous gym activity, activity which has changed only very slightly across these ten years.

At the start of 2000 my business strategic plan identified health as the greatest threat to my remaining in the workforce. Parkinson’s disease had been beyond my control. Succumbing to other conditions (e.g. heart, stroke, diabetes) was largely within my control through increased physical activity.

Within a year or two either side of my 1998 Parkinson’s diagnosis, my heart, blood pressure, blood chemistry, and lung capacity were checked. The first three were normal; my lung capacity was greater than average.

A detailed description of my gym regime and its emphasis on safety can be found on a 2007 posting on "Lifting the Weight of Parkinson's" in Shake, Rattle and Roll at:

http://katekelsall.typepad.com/my_weblog/2007/09/lifting-the-wei.html

Three overall goals govern my exercise regime:

· Retain good general health, especially in relation to heart, blood pressure, and blood chemistry.

· Develop and maintain a strong musculature to assist in retaining normal posture.

· Continue improving. Measure progress against targets and, when achieved, increase those targets.

Here are examples of levels attained during the past twelve months.

Horizontal bench press 110kgs (242lbs)

Push-ups with 20kgs plate on shoulder blades 25

Push-ups with feet on top of 65cms fitness ball, hands on floor 50

Chin-ups set of 10, followed by sets of 6 then 4

Sit-ups holding a 10kgs plate and lying on a decline bench 20

Distance rowed indoor in 2 minutes 577 metres

Time to ride stationary bike 2 kms 3 mins 29 secs

Highest bike rpm momentarily attained at low resistance 140

My four gym sessions per week last around an hour and remain structured by the same three elements as in 2000: flexibility, aerobic capacity, strength. Each session has its program. About 10 minutes is set down for flexibility, 15 minutes for aerobics, and 30 minutes for strengthening exercises. I follow a cycle of six programs, each having a different set of exercises. I found along the way that rigid muscles on my right side were more prone to soreness from overuse than muscles on my less affected side.

Aerobic exercises are split between treadmill, stationary bike, and indoor rower. Treadmill is my weakest and least enjoyable activity. My right leg tends to drag and rigidity affects the swinging of my right arm. I walk for 10-15 minutes and run for 2-3 minutes. On the bike and rower I feel unimpeded and push myself hard.

Bike and rower follow a soft/hard/soft/hard format. For example, I’ll ride the bike at less than 25km/hr for 5 minutes, followed by 2 minutes above 35km/hr, 2 minutes at less than 25km/hr, 2 minutes above 35km/hr, 2 minutes at less than 25km/hr, 1 minute above 35km/hr, 1 minute at comfortable speed. To reach 36km/hr I set resistance to 14 (max is 20), rpm being 80.

At my first gym session in 2000 I was directed to pedal a stationary bike for 20 minutes at 80rpm on a medium resistance. As I became fitter I increased the resistance, with 80rpm remaining as the default cadence. Unaware of Jay Alberts’ research until several years ago, I’d already noted temporary relief from Parkinson’s symptoms following a hard workout. For me, relief follows any hard physical training session, irrespective of what equipment has been utilized. On reading Dr Alberts’ observation I assessed myself in terms of heart rate and tremor during and following 30 consecutive gym sessions, each concluding with a light or heavy bike ride. How was my writing an hour later? Did my fingers involuntarily tap the desk? My heart rate during hard riding tended to peak in the low 150s beats per minute but on one occasion reached 179 bpm. My resting heart rate settled to 60 bpm within an hour of finishing training. Sure enough, the harder I rode, the more relaxed later. Initially, the tremor could increase after a hard ride but it would soon subside.

 

By including stretching, aerobics, and strength within each exercise session, and limiting each session to one hour’s duration, I’d never ridden a stationary bike for longer than 20 minutes. While preparing this item, I amended a training session to include riding for 40 minutes as close as possible to a constant 80rpm. My cadence held within a range of 77rpm to 84rpm until lifting to high nineties in the final ninety seconds.

My weightlifting agenda addresses upper and lower body. I lift up to at least 80% - 90% of my maximum in each weights exercise, my first lift in any weights exercise being well short of maximum. Safety is paramount. I call for a spotter (a person who places his open hands beneath the bar to protect me if I lose control) when nearing my maximum and the weight is above my body. The possibility of muscle soreness is reduced by keeping low the total number of lifts and by addressing several body areas at each session rather than concentrating on, say, shoulders.

Targets are listed alongside every aerobic and strength task. As a target is achieved, it’s crossed out and a new figure written. Many small advances translate into big gains. Performance records have been retained except from my earliest years for which period only rough notes are held.

My exercise routine is intense but isn’t treadmill-dominated as described by Dr Petzinger. My routine spreads across flexibility, three types of aerobic activity, and strengthening. My routine isn’t forced as described by Dr Alberts. I’m fit enough to reach the rpm he says is necessary.

Apart from some brief periods with muscle soreness, I’ve not been injured. My blood pressure and chemistry are regularly checked by my general practitioner. Everything has remained within normal bounds

Competition ensures a focus on improving. Around six to eight competitors in the men’s 55yrs – 64yrs age category usually take part in these events where I train at the Aquafit Fitness and Leisure Centre in Campbelltown, a suburb of Sydney.

I’ve not used a personal trainer although I do seek the opinion of my gym’s fitness instructors and have benefitted from occasional commentary from Canadian personal trainer, author, and PhD, Krista Scott-Dixon.

It’s been said that my gym performance is unusual for a person with Parkinson’s. I contend that it flows from:

· clear goals and well-considered, regularly-amended programs;

· training to near maximum capacity;

· setting achievable targets;

· persistence (attending whether rain, hail or shine);

· cheery support of receptionists, fitness instructors and fellow gym users.

What have I learned?

1. Firstly, don’t accept the limitations others may predict, assume, or recommend because of Parkinson’s disease. I don’t, and won’t, accept that my physical capacity is any less than that of anyone else. Parkinson’s disease has been an inconvenience, not an obstacle, for strenuous, physical activity.

2. I respect and am grateful for the opinions of those in the medical and physical therapy professions but the final say in managing my Parkinson’s should be mine.

3. The harder I work, the better I later feel. By 2004, I’d noticed that after a solid aerobic workout, my tremor and rigidity subsided and sleep came more easily. For around an hour following a rigorous bike session, tremor sometimes increased, but then declined and calmness prevailed. I was unaware of the research of Dr Jay Alberts but my experience was consistent with his observations except that I didn’t need someone to force me up to the cadence he’s found necessary.

4. When my stamina falters, the appropriate response is to amend my exercise regime so as to place more emphasis on endurance.

5. Lifting heavy weights has not aggravated my rigidity despite warnings to the contrary on Parkinson’s websites. I keep repetitions down to 5-8 at most per set, and usually perform only one set. It’s more common for PWP and beginners to be advised to perform three sets of 10-15 repetitions with “light” weights. I believe it’s the total volume of lifts more than the heaviness that may increase rigidity.

6. My “explosive” strength, (known as “power”), is significantly diminished by Parkinson’s. An example of power is the action of an Olympic weightlifter when snapping the bar to his shoulders.

7. “Bradykinesia”, slowness of movement, affects me in activities of daily living. Yet when working out hard on the bike or rower I can move as quickly as most. I compete reasonably successfully with my gym peers in bike and indoor rowing challenges. This is an oddity about Parkinson’s. Its hindrances are less apparent at higher levels of effort. Push myself, and Bradykinesia disappears.

8. When I commenced reading Parkinson’s literature on exercise, around early 2004, the prevailing “take it easy” advice didn’t ring true. Working out intensely didn’t exacerbate my symptoms. Training at night didn’t make falling asleep more difficult. I fall asleep more readily. Symptom relief flowed from intensity, not torpor.

9. Intensity is relative to the individual’s capability. Standing and sitting ten times would be intensive for a person with advanced Parkinson’s. Intensity means “giving it almost all you’ve got.”

10. There are many ways to exercise intensely. For several years I’d meet my son daily at the railway station to drive him home. Included as part of my exercise regime was a sprint up the railway stairs. At home there can be push-ups, sit-ups, and so on. Vigorous dancing would add an element of balance, social interaction, and test thinking skills. (All I need is a partner.)

11. Improved physical performance becomes more difficult over time. Drafting exercise programs becomes more challenging.

12. Periods of unexplained performance decline are not unusual. Refresh my programs, and then persist. Performances have, so far, resumed for the better.

In its report to Parkinson’s Australia in 2007, (Parkinson’s: Economic Impacts and Positive Steps), Access Economics identified a 2004 study by the Australian Bureau of Statistics. The bureau analyzed 1,621 people whose death certificates had idiopathic PD listed as an associated cause of death. It found that “…304 died due to stroke (around twice as likely than the general population) and….218 died due to diseases of the respiratory system (around 50% more likely than the general population), of whom 94 died due to influenza or pneumonia (over twice as likely than the general population), and 19 died due to accidental fall (over 78% more likely than the general population),…”

http://www.parkinsons.org.au/media-advocacy/docs/pd-study.pdf

These mortality statistics say to me that it’s important as a PWP to remain as active as possible and to engage in some regular exercise-induced puffing.

The benefits of the exercise regime I embarked upon in January 2000 appear broadly consistent with recent research results as summarized in the introductory comments above. It’s not possible for me to say that my exercise regime has retarded progression of the disease but it does afford temporary symptom relief. What is certain is that speeds and distances achieved on all but the treadmill, along with weights lifted, have increased since 2000 despite living with Parkinson’s. Parkinson’s disease has not been a sentence of physical decline.

The outline above describes my own exercise regime. Anyone’s exercise protocol should be unique, depending on his or her capability and experience. Prior to commencing a rigorous physical program, confirmation should be gained from a medical doctor that there are no impediments to doing so. Exercise is not a substitute for medication. If utilizing a gym, seek initial guidance from an appropriately-qualified fitness instructor. Never lift free weights without another adult being present.

My workouts occur at the Aquafit Fitness and Leisure Centre in Campbelltown, a suburb of Sydney. I’m indebted to staff and fellow members for their encouragement.

Neil Sligar

Sydney, Australia

Better Walking through Treadmill Training

 Treadmill Training Improves Walking in Parkinson's

By Michael Smith, North American Correspondent, MedPage Today
Published: January 20, 2010
Reviewed by Zalman S. Agus, MD; Emeritus Professor
University of Pennsylvania School of Medicine and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

Treadmill training can improve the impaired walking associated with Parkinson's disease, researchers said.

The technique leads to improvements in gait speed, stride length, and walking distance, but not gait cadence, according to Jan Mehrholz, PhD, of the Klinik Bavaria in Kreischa, Germany, and colleagues.

However, it remains unclear how long such improvements last, the researchers noted in a Cochrane Systematic Review.

Treadmill training has emerged recently as a "promising investigational therapy" aimed at patients with weakness on one side of the body and impaired gait, Mehrholz and colleagues wrote in their review.

To evaluate what's known about the subject, the researchers searched the literature and found eight randomized, controlled studies with a total of 203 participants.

On average, patients were 61, with an average duration of disease in the studies ranging from one to eight years.

When the studies were analyzed, the researchers found:

· Seven studies -- with153 participants all told -- found that treadmill training improved gait speed. The pooled standardized mean difference was 0.50, which was significant at P=0.003.

· Five studies, with a total of 95 participants, looked at stride length and found that treadmill training was beneficial. The pooled standardized mean difference was 0.50, which was significant at P=0.05.

· Two studies, with 41 participants, found that treadmill training improved walking distance. The mean difference was 358 meters, which was significant at P<0.0001.

· Finally, four studies (with 78 participants) found no significant mean difference in cadence.

The treadmill training was acceptable to patients, the researchers said, in that it did not increase the risk of patients dropping out of studies. Adverse events were not reported.

The researchers noted that the study protocols varied markedly.

The treadmill training lasted from one 30-minute session to eight weeks, although most studies used a four-, six- or eight-week period. Frequency varied from a single session to four times a week, the researchers said.

The type of treadmill training also varied, with some investigators using body-weight supported treadmill training and others a speed-dependent approach.

Primary outcomes also differed, Mehrholz and colleagues said.

Because of those variations, they said, there is "still a need for well-designed large-scale studies" to look at the risk and benefits of treadmill training for Parkinson's patients.

Specifically, they said, those studies should address open questions about how long the effect lasts and what should be the frequency and duration of training.

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

The study was supported by the Klinik Bavaria Kreischa, the Technical University Dresden, SRH Fachhochschule Gera, and the California State University Long Beach.

Mehrholz and another author were co-authors of one included trial but did not participate in its quality assessment and data extraction.

Primary source: Cochrane Database of Systematic Reviews

Source reference: Mehrholz J, et al "Treadmill training for patients with Parkinson's disease" Cochrane Database of Syst Rev 2010; DOI: 10.1002/14651858.CD007830.pub2.

More on Bicycling with Parkinson's

Check out today's story on ABC News:

New Parkinson's Treatment on Two Wheels

 

Related Stories:

Pedaling Past Parkinson's

Pedal Power

Embarrassed and Flattered

I have to admit that I was both embarrassed and flattered to discover that I was featured in Bob Dawson's blog, Parkinson's Patients: Yes We Can Dance.

From his home in rural Quebec, Canada, Bob monitors the worldwide activities of Parkies who are trying to fend off the monster through dance and music. He spotted me playing my accordion in the flower garden. Thank you, Bob, for sharing my story at: http://parkinsonsdance.blogspot.com/2006/05/chapter-17.html

Physical Therapist Helps Parkinson's Patients Move It!

Move It! An Exercise and Movement Guide for Parkinson's Disease

Book and DVD by Kevin Lockette, PT

As a physical therapist, Kevin Lockette has worked with people with Parkinson’s Disease for the past 20 years. His goal is to keep those with Parkinson’s moving. His unconventional techniques and exercises are illustrated in his new book and demonstrated in his companion DVD called Move It!

Move It! is a complete movement, exercise and resource guide for people with Parkinson's Disease. The book and DVD illustrate techniques and demonstrate exercises with people who suffer from Parkinson’s, and includes:

· An overview of physical symptoms

· Medication review in easily understandable terms

· Techniques and tricks for improved mobility including bed mobility, transfers, and walking

· Anti-freezing techniques that really work

· Adaptive devices for easier everyday living

· Complete exercise programs specific for Parkinson's Disease for all physical levels (beginner, intermediate and advanced)

· Complete guide and exercise program for flexibility

I like that Move It! is an exercise program that addresses the specific needs of Parkinson’s patients at various physical levels. Kevin has developed clever techniques to remedy common problems of those with Parkinson’s. For example, his tip for dealing with a freezing episode is the Poor Man’s Hula.

It is very important for me to keep moving with Parkinson’s, and following the Move It! program may allow me to do so for as long as possible. I highly recommend it.

Further information on Move It! is available at: http://www.parkinsonsmoveit.com/home

About the Author:

Kevin Lockette has been practicing as a physical therapist in the rehabilitation field since 1989. He was a past president of HAPTA (Hawaii Chapter of the American Physical Therapy Association) and the primary author of a medical text on rehabilitation, Conditioning with Physical Disabilities, Human Kinetic Publishers 1994.

Kevin has extensive experience in acute rehabilitation and is the founder of what is now the nation's largest wellness program for individuals with physical disabilities at the renown Rehabilitation Institute of Chicago. Kevin is a past head coach for the United States Disable Sports Team (A member of the U.S. Olympic Committee) and coached in International games including the World Championships and the Paralympics in Barcelona, Spain in 1992. Kevin is presently on the Clinical Advisory Council for the Multiple Sclerosis Society-Hawaii.

Kevin enjoys canoe paddling. He is also an avid basketball fan and attends UH sports whenever he can. Kevin is not only a physical therapist, but also father of two, an athlete, and non-fiction history buff. He is musically inclined in the harmonica and ukulele with a love for the blues.

It Takes Two to Tango

“It takes two to tango, two to tango
Two to really get the feeling of romance
Let's do the tango, do the tango
Do the dance of love.”

I should have been suspicious when reading the course description of the tango class sponsored by the local senior center. "Argentine Tango: This dance will touch your romantic soul. In this introductory class, you will learn what it takes to lead and follow. We’ll start in open embrace and progress to close embrace. No experience is needed and no need for a dance partner.”

My husband, Tom and I have had a brief history of couples dancing. In a ballroom dancing class about 25 years ago, the teacher, a burly German woman, grabbed me while her partner, a petite German man, snatched Tom to demonstrate a dance step. We quickly waltzed out of that class during the break, never to return to ballroom dancing.

Line dancing classes were a bit easier to manage because the difference in our heights wasn’t a factor (Tom is 6’4” and I am 5’1” and shrinking). But then we got older and memorizing the sequences of the line dancing steps became a struggle.

I had heard about the benefits of tango for Parkinson’s patients, and I wanted to give couples dancing another try. I coaxed and cajoled Tom to take a tango class with me, and he reluctantly agreed.

When we arrived at the class, tango music was blaring from the boom box. Three young couples and a single woman were nervously waiting for the class to begin. Then, the instructor, a tall blond woman from Boulder not Argentina, instructed us to “face your partner and stand closer together than you would in most other ballroom dances – close enough that your torsos are touching.” Our torsos were touching, which meant that my head was facing Tom’s lower rib cage. 

We were further instructed that the leader of the couple (Tom) was to place his right hand on the middle of my lower back and for Tom to extend his left hand out to his side with his arm bent while grasping my right hand in a loose grip. As the follower, I was to place my left hand on Tom’s right shoulder while placing my right hand in Tom’s palm with my elbow bent. By then, I was on my tiptoes trying to reach Tom’s shoulder and hand. Now that we were “comfortable,” we were instructed on how to do the tango walk – Tom walking forward and I walking backwards. Every several minutes the tango teacher ordered us to switch partners and to change positions from leader to follower. Reflecting back on that night is mostly a blur except for the pain of walking backwards for an hour.

After the lesson, Tom and I agreed that the tango is much too intimate of a dance to stand torso to torso with a stranger while in open embrace and progressing to a close embrace.

We decided to stick to dances of the past where we can dance independently without a partner – dances like the twist, pony, mashed potato and swim – recognizing that it takes two to tango.

Weight vs. Height

I’ve always been more preoccupied with losing height than gaining weight.

However, my focus has now shifted to losing weight and gaining height because of my 16 pound weight gain since Deep Brain Stimulation. I’ve lost 8 of those 16 pounds at a turtle’s pace through Weight Watchers and exercise and am determined to lose the remaining 8 pounds.

In terms of height, I have a long history of being vertically challenged. It started in kindergarten when we stood in line from the shortest to the tallest, and I was always the first. However, my doctor says that I will never again see 5'1" with my shrinking height.

I’ve discovered a couple of tricks to looking like I'm taller. Dr. Abraham Lieberman suggests that we practice standing with our hands on our hips and talk with our chin raised, like Obama.

Yoga guru, Paul Zieger, suggested that there are arm positions we can use in addition to our hands on our hips, e.g. our arms stretched behind our back with our fingers interlaced or our thumbs in our armpits lifting the front body.

So the next time you see me, I hope to be 8 pounds lighter, taller, with my chin raised, my hands on my hips, my fingers interlaced behind my back and/or my thumbs in my armpits.

Related Story:

Post-DBS-STN Weight Gain

Too Good To Be True

Medtronic, the manufacturer of the Deep Brain Stimulator (DBS),  has an offer you can’t refuse. They will provide a free trip to idyllic Minneapolis-St. Paul (or “God’s country” as the locals referred to it during those two years and 10 months we lived there).

As my Dad said, “If it seems too good to be true, it probably is.” What’s the catch? As a person with Parkinson’s Disease who has had DBS, I am eligible to apply to become a “Global Hero” by running in the Medtronic Twin Cities Marathon on Sunday, October 4, 2009.

I admire people with Parkinson's who are able to continue running. However, since I never ran a marathon before DBS, why would I think I could run one post-DBS? While pre-Parkinson’s, I was very active running 10 kilometers and occasional 10 milers, my current exercise regimen has slowed to a turtle’s pace with yoga, shuffling around the block with our old English Springer Spaniel, and displaying occasional bursts of energy through Broadway dance.

While I’m grateful for the new life that DBS has given to me, I never expected to be able to run a marathon. I can’t imagine pounding the pavement for 26.2 miles with the pacemaker-like device jiggling in my chest. Many Parkinson’s patients have a tendency toward falling, and those patients should NOT be encouraged to run even across the street, if you asked me. But no one asked.

To be fair, the Global Heroes program is open to any patient who has any of Medtronic’s implantable medical devices. For more information on the Global Heroes program, click on the following link: http://www.medtronic.com/2009globalheroes/

I'm going to decline Medtronic's "too good to be true" offer. Instead of running in the marathon in the Twin Cities as a Global Hero, I’m going to stay home that weekend and celebrate my 60^th birthday as a Local Hero/Couch Potato.

Monkey Brains and Exercise

Two Rhesus monkeys were administered a neurotoxin which destroyed dopamine neurons causing symptoms similar to Parkinson’s Disease. One of the monkeys was put on a vigorous exercise program, while the other remained sedentary. Read the full story of Dr. Michael Zigmond’s research at the University of Pittsburgh’s Center of Excellence in Parkinson’s Disease Research at:

Can Our Brain Repair Itself Through Exercise? by Frank Catanzano

Download Can Our Brain Repair Itself Through Exercise

Keep on Dancing

From his home in rural Quebec, Bob Dawson posts on his blog, Parkinson's Patients: Yes We Can Dance. He reports amazing stories from around the globe about the benefits of dance for Parkinson's patients. His latest post is from Israel at: http://parkinsonsdance.blogspot.com/2009/02/chapter-15.html

Thank you, Bob, for sharing your collection of dancing with Parkinson's stories. They inspire me to keep on dancing.

Power Up Your Voice and Body

   Photo of Mary Spremulli with her therapy dog, Franki

Voice Aerobics™ was created by speech and language pathologist, Mary Spremulli, MA, CCC-SLP. It is an exercise program focusing on breath support, posture and vocal function exercises for improved vocal performance.

I was delighted to conduct the following email interview with Mary:

Kate: What attracted you to working with Parkinson’s patients in the area of speech/voice treatment?

Mary: I have always enjoyed working with children and adults with motor and speech disorders. More than 20 years ago when working in pediatrics, I became certified in Neurodevelopmental Treatment, also referred to as NDT. One of the underlying principles of that treatment is that "normal and abnormal cannot co-exist." Based on that understanding, I would incorporate treatment approaches that included techniques to minimize or extinguish the abnormal patterns that were interfering with the more normal expression of movement, voice, speech or swallowing.

When I relocated to Florida in 1989, I began to work with primarily an adult population, including individuals with voice, motor and speech problems from Parkinson's, stroke, and other neurological events. That theory from NDT still applied, and I realized that if someone's goal was "better" or more "normal" speech, then we needed to work together to minimize the interference from the abnormal. Using Parkinson's speech as an example, there may be a number of things that are interfering, such as tremor, too fast of rate, weak voice or hoarseness. We attempted to identify the feature that was causing the most interference and minimize that by strengthening some other aspect of the speech, voice, or respiratory system.

I became certified in the Lee Silverman Voice Treatment® (LSVT) technique in 1997. Dr Lorraine Ramig and her colleagues associated with this program have published an impressive body of research describing its benefit. In my opinion, if someone has been newly diagnosed with Parkinson’s, this is the ideal time to consider the LSVT.

I realize that I may not have answered your actual question. I find that I am attracted to working with individuals with Parkinson’s, in particular, because over the last 15 years or so, I have met so many interesting patients, whose voice and speech changes from Parkinson's really misrepresent the person behind the voice. I can think of many individuals who on first meeting have weak, monotone voices. As we begin to work together, I discover that they are often intelligent, witty individuals, who were teachers, CEO's of companies, athletes, yet their true personalities are beginning to be lost inside their bodies. So, if I can help them to strengthen their system to minimize further physiological changes and to re-capture the spirit of who they are, then, that's fun and rewarding for me. I have audiotapes of patient's first and last sessions, and you can hardly believe that they are the same person talking.

Kate: What are the biggest speech and voice challenges faced by those with Parkinson’s?

Mary: Oh, wow, well, you know that answer better than me, Kate.

I would have to say that one of the biggest challenges is the insidious or sneaky nature of the speech and voice changes. Unlike someone who has had a stroke where the changes in speech are quite sudden, the changes that come about with Parkinson's are slow and gradual. For the persons with Parkinson’s they don't really seem to realize how bad their speech may have actually become.

The LSVT people talk about the need for those with Parkinson’s to become "re-calibrated," and I do think that this is at the heart of the program, but, also the greatest challenge. Even when Parkinson’s patients hear themselves producing better and louder voices, it doesn't feel natural to them. We humans seem quite drawn to the familiar, and even when we don't like some aspect of our behavior, it can be difficult to change.

The other challenge is that the individual with Parkinson’s must realize that even when a formal program of therapy of any sort has been completed, that is not really the end. Parkinson's is still in the background of their lives, sneaking around, and changing the way muscles behave, and so individuals have to make a LIFETIME commitment to exercise. In that regard, with or without Parkinson’s, if a commitment to exercise was easy, our gyms would be overflowing with members, and of course, that is not the case.

Kate: What additional speech and voice problems have you observed in those with Deep Brain Stimulation (DBS) for Parkinson’s? Have you been able to develop some unique techniques to help your patients deal with these problems?

Mary: This year in particular, perhaps because more patients are being considered for DBS, I seem to have seen a lot of patients with undesirable changes in speech or swallowing following DBS, usually after a second placement. I have had several patients with changes in swallowing. An evaluation of swallowing function should probably be conducted before DBS as a baseline, and then needs to be repeated, to include some instrumental evaluation such a video-swallow study conducted by a speech pathologist and radiologist.

The other problems I have seen are changes in rate of speech (too fast) or an increase in stuttering-like speech patterns. These last two problems are tough to address, and I am like the mad scientist, with all kinds of gadgets and gismos in my office, experimenting with what might work. I have had some patients who have had some success with a metronome for pacing to reduce a too rapid rate. I have also been experimenting with white noise masking, which for a few people has yielded instant improvement in volume.

The reduction of tremor with DBS is nothing less than miraculous for many patients, so, I guess the tradeoff of changes in speech and/or swallowing are going to have to be ones they make. I would just like neurologists and neurosurgeons to listen to their patients, when they tell them something has changed, and refer them to a speech pathologist for some help.

Kate: In your DVD, Voice Aerobics™, you combine physical exercise with speech/voice exercises. What led you to develop this combination?

Mary: I began the live classes back in 1999, as an after therapy program for individuals who had completed the LSVT. The patients knew that they needed to keep exercising, and I wanted to provide them with some tools to keep them motivated.

It seemed natural to combine movement with voice, and now that I have done this for so long, it's hard for me to just do vocal function exercises without some body movement. Since repetition of a behavior is the surest way to establish a new habit, I have also tried to tie the voicing and movement with things we do all day long, so that, for example, every time an individual gets out of their lazy boy, or up from the toilet seat, they would couple it with a "yaah" as we do in the video. I have read at least one study, where that type of speech "self-cueing," when used with individuals with Parkinson’s, actually increased the smoothness and speed of movement.

Did I mention that I'm also a dancer at heart? If you were beginning to learn the waltz, it would just be easier to count the steps out loud: one, two, three, one, two, three, and soon you would be gliding around the room, and internalizing the tempo.

Kate: Do you have any advice about voice and speech for those newly diagnosed with PD?

Mary: The best advice I can give, in addition to taking your medications as prescribed, is to begin a voice exercise program. Frequently, I receive a request from a local neurologist to contact a person for therapy, and in doing so, the person will say: "I don't think my speech is that bad, yet." GRRRRR!!!!! If they wait until the day of the "yet," they will already be in trouble.

Recently I have watched a few episodes of the Biggest Loser, and I compare some of those folks to the persons who want to wait for their speech, voice, or swallowing to get worse. I would ask: Do you think it would have been easier for those contestants to lose weight when they were only 10 pounds overweight, than waiting until they were 250 pounds overweight? Well, it's the same thing really. If you are fit, your larynx is healthy, and you aren't having any particular speech, voice, or swallowing problems "yet," then you are the PERFECT candidate for a program.

Voice Aerobics™ can also be a good program for those reluctant individuals who don't want to enroll in therapy. They can begin training the muscles, heightening their awareness of the connection between posture and breathing and voice, and hopefully preserve your their function for as long as possible.

***

For more information on Voice Aerobics™, view the website at:

http://www.voiceaerobicsdvd.com

In Seach of Gracefulness

Here’s a story from NPR confirming the benefits of dance for those living with Parkinson’s Disease:

Parkinson's Patients Find Grace in Dance by Jacki Lyden

Listen to the story at:

http://www.npr.org/templates/player/mediaPlayer.html?action=1&t=1&islist=false&id=98230200&m=98230221

Related Resource:

Bob Dawson’s blog, Parkinson’s Patients: Yes We Can Dance

Embracing Change

I am becoming a smug dancer with the Rockyettes, Colorado’s version of the Rockettes in New York.

The dance steps are starting to sink into my shrinking Parkinson’s brain. I develop elaborate three-column spreadsheets with the first column containing lyrics, the second column with my written description of the dance steps, and the third column with clip art as a visual cue. For example, the dance step “chasse” reminds me of a galloping horse, and I use it as my clip art. This is a problem when I can’t remember in which direction the horse should be galloping.

 

Other dancers and I develop our own nicknames to remember the dance steps. For example, we rename dance steps as the teeter-totter, the mix master (I think I’m revealing my age on this one), and shaking the laundry.

Even my struggle with the sequence of the dance steps improves when I bombard my brain using all my senses (except the sense of smell, which has become nonexistent since Parkinson’s).

I am becoming a multi-tasker, simultaneously dancing and smiling, dancing while breathing, dancing while focusing on being in the present while trying to remember what step follows in the near future and dancing while observing members of the audience who are sleeping.

Every night before bed, I rehearse in my head the sequence of the steps of the dance routines. I’m becoming obsessed. Fellow dancers say that I have too much time on my hands, and/or I'm becoming a nut case.

When it’s performance time at the assisted living and retirement facilities, I feel prepared with a positive edge of excitement. I’m ready except that my carefully-made plans have to be set aside to accommodate the changes necessary in today’s performance. We must dance along a diagonal instead of straight line in order to be seen by the audience. We change our costumes, a different one for each song, in the hallway while the seniors sit in their wheelchairs watching the soaps and the dancers dress and undress (not to worry, we are covered by long-sleeved leotards and tights under our costumes). We need to rearrange our dance groups because one of the dancers is sick and isn’t able to perform. Because of the layout of the room, we need to enter and exit on stage left instead of stage right (it’s not really a stage, but a taped area on a slippery linoleum floor).

I hate when that happens. I hate dancing on a diagonal line on a slippery linoleum floor and entering and exiting on stage (or floor) left. But I must learn to embrace change.

While chatting with the folks in the audience after the performance, I melt when an elderly man takes my hand and kisses the back of it, thanking me with “You are an angel.”

Bring on the change. I’m ready to embrace it.

Tango Therapy

The following is from a presentation at the Davis Phinney Foundation’s Victory Summit on October 4, 2008 in Westminster, Colorado.

Exercise, Your Options: Alternative Approaches for Those with Parkinson’s Disease by Gammon M. Earhart, PhD, PT, Washington University in St. Louis, Program in Physical Therapy, St. Louis, Missouri, USA

Why tango instead of traditional exercise?

• Tango may target specific PD-related movement deficits such as:

· Movement initiation

· Bradykinesia

· Instability (particularly backwards)

· Reduced stride length

· Turning

• Tango music and partner may serve as cues to facilitate movement

• Tango dancing can benefit balance and functional mobility

• Tango subjects improved more than traditional exercise subjects on some measures

In a study comparing tango with waltz/foxtrot, Tai Chi and no intervention, the training sessions involved:

• 57 people who had PD for 5-10 years on average

• Assigned to one of following groups: tango, waltz/foxtrot, Tai Chi or no intervention

• Training consisted of two 1 hour lessons/week

• 20 lessons were completed within 13 weeks

• Assessments were performed within a week of beginning and completing 20 lessons

Results indicated that:

• All exercise groups improved on balance, distance walked in six minutes, and disease severity ratings

• Only tango groups improved on quality of life and backward walking

From my own experience in dancing with the Rockyettes, I have also found that dancing in a social setting improves my motivation to exercise.

In pursuit of anything that keeps me moving, I will be looking for tango dance classes.

One Small Victory

I’ve been avoiding my bicycle. I haven’t bicycled since Deep Brain Stimulation surgery for Parkinson’s (PD) in May 2005. I always had an excuse – my balance wasn’t good, I was too shaky, I might fall, I was too tired, after all I’ve had PD for 12 years, etc. Today I wanted to get beyond the excuses, and just do it.

I asked my husband, Tom to take a look at my bike and get it ready so that we could take a short ride on this beautiful autumn day in Denver. He pumped up the tires and we dusted off my woman’s hybrid bicycle, a cross between a mountain bike and a touring bike with tires that are not too thick and not too thin. I put on my 33 year old Bell Helmet, Tom hopped on his touring bike, and we were good to go.

I told Tom that the purpose of today’s ride was to get over my fear and to build confidence. Even before PD, I’ve always been a slow rider (unlike my hero, Connie Carpenter-Phinney). Speed and distance were irrelevant today. On today’s ride, memories of previous bike trips with Tom floated by – biking along the northern California coast, the Canadian Rockies, Vermont and Wisconsin.

I’m elated. I did it. It was one small victory for Kate and one large victory for PD survivors.

Pedal Power

When the media frenzy focused on Hurricane Gustav and the Republican National Convention, I couldn’t figure out why my blog readers were zeroing in on a different topic – bicycling with Parkinson’s. I had 650+ hits on my blog in the past two days, primarily on one story Pedaling Past Parkinson’s that I wrote more than a year ago in June 2007. 

On September 2, 2008, Brian Williams of NBC Nightly News reported a story about Jay Alberts, a researcher at the Cleveland Clinic, who is studying a new treatment for Parkinson’s Disease: “forced exertion” through tandem bicycling at 80-90 rpms. The preliminary research suggests that the rate of exercise is an important factor in decreasing the motor symptoms of Parkinson’s Disease.

Check out the report, Parkinson’s and Bicycling, at:

http://www.hulu.com/watch/33047/nbc-nightly-news-with-brian-williams-parkinsons-and-bicycling

Thank you, Brian Williams, for increasing awareness about exercising with Parkinson’s

Why I Love Being a Rockyette

Click on photo for larger image.

 

Last September when I signed up for Broadway dance classes with the Rockyettes, I had no idea what I lie ahead.

 

The Rockyettes' last dance performance of the season was on June 13, we turned in our glittery costumes and celebrated with a good-bye lunch on June 18. Our classes resume in September, but I am down in the dumps trying to figure out how I will spend my free time. I was never good at free time and if a course was offered on “how to relax,” I definitely would fail.

 

I love being a Rockyette because…

 

I feel healthy.

While I've heard murmurings of hip and knee replacements, strokes, heart attacks, cancer and rods in backs of some of the Rockyettes, at this point, I seem to be the only one diagnosed with Parkinson’s Disease. I like their attitude. They’ve heard it all, and it’s no big deal. The show must go on regardless.

 

I feel young.

Someone in the audience, who presumably was visually impaired, asked “Who is that little girl dancing with your group?” I chuckled when I discovered she was inquiring about me. Isn’t it ironic to look like a little girl but have an old person’s disease like Parkinson's?

 

I feel tall.

In the above photo, I’m the “little girl” on the far left. With the top hats, it’s difficult to determine if I’m the shortest dancer in the group, but at 5”1” (and shrinking) it’s safe to assume that I’m not the tallest. Dancing with tall women makes me feel tall.

 

I have high performance needs and love to entertain.

The Rockyettes certainly helped with my high performance needs. With nine performances in the month of May alone, as a group we’ve had lots of opportunities to entertain.

 

I admire Ann Kennedy, the director of the Rockyettes (also the founder, producer, instructor, choreographer and costumer).

Her unfailing patience and ready smile have brought joy to our lives as well as those for whom we have danced.

 

I am blessed to be a Rockyette.

Dancing Out of Our Comfort Zones

Click on photo for larger image.

 

I am filled with excitement and nerves. I drive into the parking lot at the North Jeffco Community Recreation Center in Arvada, Colorado at 5:30 PM last Friday night. This is the main event of the season for the Rockyettes, a tap and Broadway dance ensemble. I am dancing tonight as a relatively new member of this group.

Earlier today, my hairdresser transformed my hair into a sassy style and put on stage makeup including the requisite red lipstick. There is something about red lipstick that encourages me to develop a different persona. I am sweating through my makeup on this hot summer afternoon.

 

I walk into the building and into the theatre where 260 chairs are set up for tonight’s performance. Fifty women dancers, mostly seniors, wait to rehearse the closing bows. Each dance group has its own timetable of when to go on stage and how to bow. The music of “Can-Can” is blaring in the background.

 

The rehearsal is over at 6:00 PM, and the doors to the public are opened. My husband, Tom drove separately. He waits in line with his two pans of homemade poppy seed coffee cake, baked from scratch by Tom himself, recipe courtesy of his late Czechoslovakian mother. This has become Tom’s signature recipe. Once people try it, they are addicted. It must be the poppy seeds.

 

My friend, Janet, calls earlier to confirm that a group of 17 people are accompanying her to tonight’s performance. I assume that the 17 are from her line dancing class. Ten other people confirm their attendance directly with me so now I am up to 27. I am stunned.

 

I am also surprised to see two men waiting in line that I knew from an accordion band that I played with several years ago. One of the men even had his accordion in tow because he was afraid that if he left the accordion in the car, the wax in the reeds would melt.

 

I proceed to the dressing room at 6:00, still astonished that so many people would choose to spend their Friday evening watching the dancing seniors. The Rockyettes performance begins precisely at 6:30 and ends exactly at 7:45. We move like clockwork, with beautifully designed costumes, different for each number. I dance in two of the Broadway dance songs.

 

When we enter the stage, I look directly into the audience. I cannot see anyone because the lights are turned down except for the stage lights, which are turned up. I see a silhouette of Tom who is snapping pictures at stage left. I dance and smile to the presumably full house, not knowing whom from those I invited are in attendance. The dancers are having fun and at that moment, everything else doesn’t matter.

 

After the finale of “Can-Can” and the closing bows, the house lights are turned on. I head off stage for the main floor to visit with friends and enjoy refreshments, including Tom’s coffee cake.

 

The biggest shock of the evening is seeing my accordion teacher and band director, Alice with her band members that I played with in my earlier Parkinson’s days. Alice conducts an accordion band every Friday night. The previous Friday, Janet (yes, the same Janet, a line dancer and accordionist who invited 17 people) informed the band that she wouldn’t be attending the following Friday because she wanted to see me dance. Alice’s and the band members immediate responses were “me too.” Alice cancelled band for the following week. In the 14 years that I have known Alice, she never cancelled band for any reason. This was a first for Alice.

 

And this was a first for me… While dancing tonight, I feel and look as though I don’t have Parkinson’s.

 

It seems like we are all dancing out of our comfort zones.

Davis Phinney Celebrates His Biggest Victory through DBS

Check out Sports Illustrated's story by Austin Murphy entitled: Davis Phinney Celebrates His Biggest Win (so far) at: http://www.sportsillustrated.com/2008/writers/austin_murphy/04/28/phinney/index.html

Related Links: Phinney hits last step of Parkinson's surgical relief plan The Associated Press Published: April 26, 2008 http://www.iht.com/articles/ap/2008/04/25/sports/CYC-Phinney-Surgery.php