According to the New York Times….

Exercise Can Be a Boon to People With Parkinson’s Disease

No kidding…….I have written many times about the benefits of exercise for people with Parkinson’s Disease, as have my fellow Parkinson’s bloggers.  An article in yesterday’s New York Times reiterates much of what I have said before.  The author says: “For Parkinson’s patients in particular, regular exercise tailored to their needs can result in better posture; less stiffness; improved flexibility of muscles and joints; faster and safer walking ability; less difficulty performing the tasks of daily living; and an overall higher quality of life.”  If you are like me and exercise regularly to help improve your symptoms, you already knew that.

I can attest to the benefits of exercise for me, especially since I am returning today from an 18 day cruise.  While I tried to exercise daily, it is hard to maintain a routine while traveling and by the end of the trip I could really feel the difference; my body was just not in sync.  So my body and I are both looking forward to getting back to yoga, boxing and the other activities that keep us moving.

I have found that regular yoga helps with flexibility and balance and boxing builds strength, endurance and agility.  The combination of the two has wIMG_0386orked well for me (and many others).  They make a huge difference in performance in other areas like tennis — better footwork, faster response times and even in seeing the ball better. Most importantly, I just feel better overall.

BUT do not start an exercise program without consulting your doctor first, especially if you have not been exercising.  Your doctor may want you to begin an exercise program by working with a Physical Therapist to establish a baseline for you and to help you learn exercises that will be beneficial for your specific needs.  And don’t forget getting motivated,  Working with a personal trainer provides one kind of motivation through personal attention; group classes provide a different kind of positive social reinforcement.  Find the mix that works best for you.

And don’t forget to exercise your brain; doing puzzles, playing cards or practicing with a musical instrument.  I may have found a new mental exercise in getting reintroduced to playing Bridge during our cruise. During days at sea we joined the daily beginners classes in the morning, and often played with the group in the afternoon as well.  Bridge, more than any other card game I have played, requires total concentration and attention to the every aspect of the game.  And the game’s conventions have changed dramatically since we learned to play over 40 years ago.   I hope that relearning the game almost from scratch will provide new and fun mental exercise (boxing for the brain??) and improve my mental concentration the way phsyical exercise has helped my body.

Hopefully we will find a way to continue to play Bridge now that we’re home and that it will find its own regular place in my daily or weekly routine (without becoming another Parkinson’s obsession).  Introducing and maintaining changes in those routines while keeping everything in balance is itself a challenge that we should look forward to meeting.hand35-b

100 and counting

Wow, it has been an interesting journey!  I started writing this blog in March, 2015, as a way to share my experience with Parkinson’s Disease with others.  I never imagined that I would still be writing almost 2 years later, with this my 100th post!  15 people read that first post when it was published.  Now my subscribed readers number several hundred, with many more just checking in, coming from 76 different countries.   I want to thank all of you for your support over the last 2 years.

Looking back on the past year, there have been many exciting findings in Parkinson’s research.  The most important is the change in thinking about how Parkinson’s gets started.  Research now points to changes in the microbes in the gut as the trigger for setting off Parkinson’s symptoms.*  What this means for us:  a possibility for earlier detection with a screening test, and new treatment options that begin before damage to the brain occurs.  To learn more about it, register for Michael J Fox Foundation’s next webinar  on January 19, titled  Gut (Bacteria) Check on Parkinson’s: Role of the Microbiome.   Maybe this will be the year………

There has also been a world-wide effort to change the image of Parkinson’s from the stooped over, shuffling person to someone who is actively enjoying life with PD. Photographer Anders Leines‘ photo exhibit at the World Parkinson’s Congress was highly successful.  There is also a Facebook page, Many Faces of Parkinson’s that is working to change that image.  The World Parkinson Coalition has just published a book Faces of Parkinson’s: Global Reflections of PD which can be ordered through their website.

Exercise has also been a positive force this year for PwP.  Many studies have shown that exercise can be more beneficial in relieving Parkinson’s symptoms that anything else. See Exercise May Be Real Medicine for Parkinson’s Disease.  Yoga, boxing and tennis keep me going.  If you are not exercising, 2017 is the year to get moving.  There are so many options, either in group exercise classes, online videos or just walking.  Just check with your doctor before beginning any exercise program.

I was fortunate to attend the World Parkinson Congress in Portland in September.  This amazing conference brought together over 4300 people from around the world, People with Parkinson’s and their caregivers, doctors, scientists, and many others in related fields for 4 fabulous days. I am so glad that I met many of you there.  I hope that we can all meet in Kyoto in 2019 at the next WPC!

My Parkinson’s resolutions for 2017:

  1. Keep on moving:  exercise every day.
  2. Keep a positive attitude.  Look in a mirror and smile – it will brighten your day.
  3. Participate in PD research.  PwP’s are an important part of finding the cure,
  4. Get more sleep.
  5. Hug my grandchildren as much as possible for they are the best medicine! (Thank you Linda B for saying that).

Have a wonderful and healthy 2017!

Some photos from 2016

 

 

 

Inspired by Colleen

Our support group, Inspired Women with Parkinson’s in Los Angeles, met last Sunday with yoga therapist extraordinaire, Colleen Carroll.

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Colleen Carroll and Jen Heath

We began the meeting with each person naming one challenge she has because of Parkinson’s.  The two most common challenges were deteriorating handwriting and sleep issues.  It seemed that handwriting was much more important than lack of sleep to almost everyone.  What are some of the challenges facing you as a Person with Parkinson’s?  Take the poll below.

According to Colleen, yoga as therapy is a new phenomenon, beginning abut 30 years ago with Mr. TKV Desikachar.  To illustrate that the breath is the fundamental element in yoga, Colleen quotes Mr. Desikachar: “If you can breathe, you can do yoga.”   It is the art of synchronizing breath and movement.  When the nervous system starts to get unified, balanced and brought together, we start to behave, breathe and move in a harmonious way.  Beginning with the breath, the goal of yoga is to calm the activity of the mind.  This mental focus gives you the ability to command the pace of your thoughts and the quality of your thinking and to direct the mind in a single-pointed way.   What happens over time is that we replace the multi-level activities in the brain with a calmer sequence of thoughts.

Colleen has a new DVD coming out in the next few weeks called NeuroTherapeutic Yoga,  specifically for people with Parkinson’s and other neurological disorders. There are three breath-based sequences; a floor sequence that can be done on the bed if you cannot get on the floor, a standing sequence using the chair if needed, and a chair sequence.   All can be modified to fit your needs.  You can play all the way through it or choose just one section.

After Colleen’s introduction to yoga therapy, we took our chairs and yoga mats and spent a wonderful hour practicing yoga.  We ended with viparita karanii (legs on a chair), listening to Colleen’s soothing voice leading us through a meditation.  Everyone left refreshed and much calmer.  Thank you Colleen.

 

 

Boxing in the Windy City

“You get so much more out of giving than taking.  Just try to do something nice for others every day.”

Jim Kroeger

There is a Rock Steady Boxing in Chicago, not too far from my daughter’s house on the north side of the city.  I found it last year when I visited her and have gone to several classes there.  As in Los Angeles, the boxers have formed a bond due to Parkinson’s Disease.  I am always greeted with a big IMG_1571“welcome back” whenever I am there.

The owner of the gym, Jim Kroeger, has Parkinson’s, so I took a few minutes of his busy day earlier this week, to talk to him about his journey with PD.   Jim is an inspirational figure, not only running the gym and some of the boxing classes, but he also participates in some of the classes alongside the other boxers.    Yes, he is 10 years younger than me, but I was impressed by how well he does in class.  His reflexes are so fast, it was difficult to keep up with him when we were shadow boxing.   If I didn’t know better, I would have sworn that he does not have Parkinson’s.

Jim’s story began several years before his diagnosis, like many of us with PD.  The signs were there, but no one saw them.  He was a weight lifter who, in his mid-40s, started to notice that his strength in his upper body was waning and that his shoulder was giving him a lot of trouble.  He had an MRI which showed some tears in his rotator cuff, told it wasn’t anything serious by several shoulder specialists and was sent home with steroids.  But his arm would stiffen up again and he saw another orthopedist, who gave him a diagnosis of arthritis.  As time went on, his strength continued to decline and some of the things he used to do became impossible.  He knew something was wrong.  Simple tasks became increasingly more difficult, but he thought his symptoms were just a result of getting older. Things were getting harder and harder to do.

An outing to the Cubs game in 2013 with business school friends changed everything.  The conversation eventually turned to how he was doing.  He told them about his shoulder stiffness and other issues. One of the friends said that he thought Jim did look stiff.  Another friend was familiar with Parkinson’s because his father-in-law was afflicted.  This friend called him a couple of weeks later and said that the symptoms Jim was experiencing were similar to his father-in-law’s and recommended that he see his father-in-law’s neurologist at Northwestern.  Jim never thought that he could have Parkinson’s.  He just thought it was middle age and his body was falling apart.

He googled Parkinson’s and saw that he had a lot of symptoms, but he didn’t want to panic yet.  So Jim went to his regular doctor and said he thought he might have PD, but the doctor did not take him seriously because of his age.  He suggested another MRI on Jim’s shoulder, but Jim refused.   Instead he asked to see a neurologist.  Jim persevered and went across the street to the neurologist’s office that his friend recommended and tried to get an appointment.  It was August and the first appointment available was December 16. He thought since it isn’t an emergency and he didn’t even know if he had Parkinson’s,  he would just wait until December.  He went home and didn’t think about it much, but by Thanksgiving, his condition had declined significantly.  By now, his wife had to help him get dressed and put on his belt, coat, etc.   At Thanksgiving, his family was very concerned about how he looked, but he didn’t want to say anything at that point.

Finally, after 3 years of odd symptoms and declining strength, on  December 16, 2013 he got his diagnosis.

Jim saw an assistant to the doctor who put him through all of the moves.  Count backwards from 100 by 7, which he passed with flying colors thanks to his B-school background, tap your feet, open and close your hands, etc.  The doctor came in and Jim says she could probably point out people with Parkinson’s just by looking at them. Finally getting the diagnosis was a punch in the gut and a relief as well.  Now he knew what he was up against and it could have been a lot worse, citing two friends from high school who had died from ALS.  It all makes sense in hindsight, that the signs were all there, but he did not know what they were.

Having Parkinson’s has changed how he looks at life.  Jim feels that he has a need to help others.  Through his three gyms, he can offer Rock Steady Boxing classes in addition to many other exercise programs.  He found out about Rock Steady from a social worker at his neurologist’s office in 2014.  The only program in Chicago at the time was in the western suburbs, so she suggested that he look into offering it at his gym in the city.  He then convinced some of his instructors to go to the Rock Steady training.

In the meantime, his mother connected him with Eric Johnson, a personal trainer, who was also from Madison, WI, where Jim grew up.  Eric got certified to teach with Jim and the program took off as did their friendship.

Jim says boxing really keeps you sharp.  Everything about boxing is perfect for all of the symptoms of PD.  When he is hitting the focus mitts, he doesn’t hold back and hits as hard as he can.

His advice for the newly diagnosed:  keep moving, get involved, keep a positive attitude.  It is easy to get down – look at someone like Robin Williams.  You can’t have that attitude.  What has been great about RockSteady is that he is helping others along with himself.  It is so rewarding.  He sees this as the next chapter in his life and he is in a position to give back.  He looks to people like Bill Gates as an inspiration, who give back using the success that they have to make the world a better place.

He has learned to appreciate life so much more.  He says “You get so much more out of giving than taking.  Just try to do something nice for others every day.”  He sees how people in his classes improve and it feels great.  If he can make people feel better, then it is certainly worth getting out of bed every day.

boxing-gloves

For more information on Rock Steady Boxing Windy City, go to:  https://www.rocksteadyboxingwindycity.com/

PT or not PT?

On Sunday, our Inspired Women with Parkinson’s in Los Angeles group met with Dr. Ali Elder of [re+active] physical therapy and wellness in Los Angeles.  Dr. Elder spoke to us about the benefits of exercise for People with Parkinson’s (PWP) and showed slides of dopamine in the brain before and after exercise.  Exercises can delay the progression of the disease and the release of dopamine in our brains can make us happier.

The bottom line:  Exercise is medicine, don’t forget your daily dose!  Exercise on a regular basis, but make sure that it is something that you enjoy.  The fact that you enjoy it is a result of the increased dopamine in your brain.  And the exercise does not have to be limited to just doing cardio on a bike.  Dancing, hiking, walking, yoga, boxing, tennis and more have been shown to not only increase our dopamine, but also our flexibility, balance and general well being.

So when and why should you see a physical therapist?  According to Dr. Elder, you should be seen immediately after diagnosis.  An assessment will help determine how the PD is affecting your gait, your reflexes, balance and much more.  Exercises can be assigned to address your issues and help to slow to the progression of the disease.  It was recommended to start with one visit to get a baseline of physical function and then the frequency of follow-ups can vary from once per week, once every six month and everything in between.

A physical therapist can also talk to you about taking your medications properly and the effects of food on your medications.  Only a few women in the room had actually gone to a physical therapist.  Most of us did not know that this was an option for us.

Finally, Dr. Elder and her assistant, Jazzy led us through a PWR!Moves workout.   PWR!Moves is a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.  There are 4 basic exercises designed to address symptoms related to Parkinson’s. PWR!Up, PWR!Rock, PWR!Twist and  PWR!Step.  After going through different versions of each of the 4 exercises fairly confidently, we then had to walk across the room throwing a scarf in the air and catching it with the opposite hand.  Chaos ensued.  Just when you think you have figured it out, your balance is affected.  Try it and see what happens.

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Photo courtesy of PWR!