When DBS goes wrong

I first met Vince Hendrickson several years ago in a Rock Steady Boxing class (now StoPD). It was always fun to be with Vince in class. He was always moving faster than everyone else, punching the bag with glee. He had a great sense of humor and inspired the rest of us to just have fun while we were there.

But sometime in the last few years, things started changing for Vince. We could see that he was struggling more and more in class. And freezing when trying to run. I sat down with him last week to talk to him about his experience with Parkinson’s.

Vince was finally diagnosed in 2000, after having symptoms for several years. Like most people with PD, it took a couple of years and testing for several other diseases, such as Lyme Disease and Fibromyalgia, before he was finally diagnosed with PD. His symptoms did not begin with a tremor, but instead with cramping and pain in his joints. His doctor started him on Sinemet (Carbidopa/Levodopa) about 1 ½ years after his diagnosis.

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Vince Hendrickson

Unfortunately Sinemet was not very effective for him.

About 5 years ago, Vince underwent DBS (Deep Brain Stimulation) surgery, which worked very well for him. But a second DBS surgery 3 years ago was not so successful. It turned out that the DBS unit was defective and had to be replaced. So Vince had yet another DBS surgery. Still no improvement. Another problem arose after the second DBS – Freezing.  Suddenly Vince would find his feet stuck to the floor. He has no problem walking up stairs, but when he gets to a flat surface, his feet just won’t move. So how does he deal with this? Vince took a “Big and Loud” course, which has helped with the freezing. He says the class helped him to retrain his mind to walk again. He has learned how to will himself to move. Of course, it becomes much more difficult to do that when he is tired. But I noticed at the end of boxing class that he was actually walking better. Vince agreed, but said that unfortunately the benefit of exercise wears off too quickly.

He has learned how to will himself to move.

Soon after his diagnosis, Vince had read that exercise was best thing for him to do to combat Parkinson’s. Before he found Boxing classes, Vince practiced Tai Chi and rode his bike. He was determined to live an active life-style. Things just didn’t work out the way he had hoped they would. He has had to give up some of the exercises he was doing since his second DBS surgery.

Vince worked for about a year after his diagnosis. He eventually had to apply for disability because it became too difficult to continue his job as a printing press operator. He is fortunate that he has his wife as his caregiver. She goes to all of his appointments with him, advocates for him and is very supportive. They still travel as much as they can. Vince told me that for the stress of airports, they purchased what he called a “Personal Carrier Chair.”  The chair, made by DeVilbiss,  is a Folding Transport Chair , which is essentially a folding chair with wheels that weighs only 19 pounds. If Vince is having trouble walking, all they have to do is open the chair and his wife can push him around. This chair has made it possible for him to travel and do many of the things that he wants to do.

Vince never ceases to amaze all of us in Boxing class.  He does whatever he can, and modifies if necessary.  Instead of running or walking, he will march in place, which he has no problem doing.  He can do just about anything in class that does not involve walking.  And he does it with determination and a smile on his face.  Thank you, Vince, for inspiring all of us.

Exercise, Exercise, Exercise

Exercise is your medicine!  Do it EVERYDAY

[re+active] physical therapy and wellness

By now, you know that I am a big fan of exercise.  It has been a daily part of my life since I was young.  Since my diagnosis with Parkinson’s, it has become not just something I enjoy, but something that I must do to keep on moving.  I am sure that many of you feel that way as well.  But for those of you who have never embarked on an exercise program, you need to speak to your Movement Disorders Specialist about how to begin.  You may think that you cannot exercise because of limited movement or pain caused by PD.  That was the prevailing theory 50 years ago.  Today,  however, we know that lack of exercise only makes things worse.  You know the old adage:  use it or lose it.

Scientists, such as Dr. Jay Alberts from the Cleveland Clinic Lerner Research Institute, have shown the benefits of forced exercise on PD.  As a result, many physical therapists and trainers work with PD patients to improve motor function using forced exercise.

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We have been told that Neuroplasticity is crucial to either change or delay the progression of PD.  And exercise is one of those activities that allows the brain to change. Exercise enables more of the dopamine in the brain to be used.  It is important to exercise outside of your comfort zone.  It increases blood flow to the brain and allows the neuroplasticity to occur.  Goal directed exercise allows for these changes in the brain to occur.  It improves the circuitry and improves the connection of the basal ganglia to the cortex.

Physical therapist, Allie Southam, from [re+active] physical therapy & wellness explained all of this in a fascinating talk last Sunday.  Briefly:

  • #1 reason for exercise:  potential to slow the progression of PD through neuroplasticiy
  • Find exercise that you love – otherwise you won’t do it
  • Goal-directed motor skill training through acquisition of skills
  • Learning a skill is hard, practice drives skill aquisition
  • Getting feedback during exercise – allows us to challenge ourselves
    and make ourselves aware ofour movements.  What used to be automatic now requires us to think about what we are doing.  It is also motivational

You can read a summary of her talk here.

Exercise for PD Handout

Tom McLaughlin, a personal trainer whose wife, Linda, has PD, has been working on a training program to improve PD symptoms.   He says that the brain is a learning machine.  Because of dopamine depletion, we have cut off the connection between the brain and our muscles.  The brain doesn’t know the connection is gone, so you have to go back and have your cognitive brain focus on motor function and motor skills.  You have to overcome the “defect” in the brain through exercise.

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Tom’s exercise program tries to activate all of the muscles, and challenge them, in order to improve neuroplasticity in the brain.  There are 16 steps to his program with the goal to work on 8 muscular functions on the top half of the body and 8 on the bottom. Those steps include working with each muscle group to move out to the side, the middle, forward and back, and to the 4 corners.   Focusing on these 16 steps will help the brain reconnect with the body to return to more normal function.

Both Allie and Tom stressed the words Focus and Learning.  To improve your PD symptoms, you must focus on your movements to make them become automatic again, and you must learn new skills to increase the neuroplasticity in your brain.

 

Some related articles:

Study: Biking Restores Brain Connectivity in Parkinson’s

Brain Connectivity

 

Practice Makes Perfect

 

It doesn’t get easier, you just get better

seen on a t-shirt at Box n Burn gym

You want to try something new, but it just seems too difficult.  You go to your first yoga class and you are lost.  Everyone else seems to know what they are doing, but you are clueless.  You keep going, hoping that you will figure it out.   And then, one day, you are moving through the poses like everyone else.  Your body seems to know what to do.  You wake up one morning to discover that you can get out of bed much easier.  In addition, your gait has improved, your balance is better, and some of your other symptoms have improved.  How did that happen?

Malcolm Gladwell, in his book Outliers: The Story of Success quotes neurologist Daniel Levitin, who said “that 10,000 hours of practice is required to master a level of mastery with being a world-class expert – in anything”.  He goes on to say: “It seems that it takes the brain this long to assimilate all that it needs to know to achieve true mastery.”  On average, it takes 10 years to reach 10,000 hours.  Some examples he gives are The Beatles, concert musicians and hockey players.  Their commitment to practice many more hours than others gives them the skills they need to be the best of their profession.

So how does that apply to Parkinson’s Disease?  We certainly don’t have the luxury of doing something for 10,000 hours.  But if we keep working at a task,  we should improve.  Right?  That is the theory behind LSVT, Rock Steady Boxing, Dancing for PD, Yoga and all of the other PD exercise programs out there.  We are told to learn new things.  It is good for the brain.  It can be difficult to learn a new skill, especially if you have a tremor and stiffness.  You start out slowly.  But it should start getting easier as your muscles and your brain adapt.  And gradually you will work harder and better, without even trying.   If you stick with it, you should start noticing positive changes. You have practiced your voice exercises diligently and at some point, you discover that no one is complaining that they can’t hear you.  You have worked hard enough and long enough to be able to project your voice without even trying.  It now comes naturally to you.

Unfortunately, many Parkie’s are in a slow downward spiral as their symptoms continue to worsen.  They try everything they can to slow down the progression, but don’t put in enough time to “master” a skill.  I wonder what would happen to Parkie’s if they danced or boxed often enough to reach 1000 hours a year.  Would they begin to master the moves?  And how would that translate into improvement of their PD?

These are questions for the researchers out there.  I don’t know the answers.  But I do know that when I am engaged in an activity that I have been practicing often, my PD symptoms seem to improve.  I may not have mastered the activity, but it is getting easier over time.   And that definitely makes my life better.

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If you are not sure what type of exercise to do, here is a list of 12 types of exercise suitable for Parkinson’s Disease patients

A note to my readers, we are leaving for a vacation in Ireland, so there will be no post next week.

PD Boxing Packs a Punch

Find what moves you and fight for it.  Michelle Lao

Boxing coach Michelle Lao has written a guest column for Twitchy Woman about the benefits of boxing for PwP’s.  She has also created a short film about Boxing for PD titled On The Ropes:  Battling Parkinson’s Disease.  Several of the boxers that I work out with are featured in the film.  Click on the link below to watch.

It is incredibly ironic that a sport like boxing, often associated with being a contributor to Parkinson’s Disease, can also stop the advancement of it. There was always a strong correlation within the boxing community, that the constant blows to the head caused Parkinson’s. If the correlations are true, then the poison can also be the antidote. Boxing training places a heavy demand on the body which aides in re-establishing lost connections and building new ones within the neuronal circuitry. By learning a new sport, you are acquiring a new skill set that helps to increase neuroplasticity. With my PD fighters, I have seen countless mind body connections being made in boxing. These connections formed have slowed down the progression of Parkinson’s Disease. Here are the physical benefits that I have seen in my fighters:

  • Restoring loss of function in fine motor skills and gross motor movements.
  • Increase improvements in balance, coordination, gait, range of movement (flexibility), and proprioception (awareness of the body in terms of space)
  • Decrease in the slowness of initiating movement, in muscle tone (rigidity), and in frequency of involuntary movements (tremors)
  • Better sleep

Boxing can help improve cognition. Although boxing is a full body workout, it is also a cerebral sport. In my classes, boxing is used to sharpen the mind. My PD boxers have to be able to quickly adapt, predict, track and execute precision in movement and timing. When training, my boxers are constantly recalling combinations and patterns whether it’s by verbal or physical feedback. By engaging in these boxing drills, my boxers have shown significant cognitive improvements in the following areas:

  • Increase in executive function, memory and thinking
  • Improvement in verbal communication
  • Decrease in cognitive delays
  • Less confusion, more focus

I approach fitness more holistically. I believe that wellness creates a well-being. I find that my boxers have been able to find a community of people that they can relate to without having to explain the hurdles of their disease. Everyone is on the same playing field. PD boxing classes have helped my fighters manage their disease at an emotional level and the benefits are countless. Here are a few boxing benefits for emotional well-being:

    • Empowerment. You own the disease; it doesn’t own you.
    • Confidence. You know what your body can do for you and you can seize the day with it.
    • Cathartic. You can release all your stresses by punching it out.
    • Camaraderie. You gained a supportive network of friends who motivate and encourage you.
    • Independence. You no longer need to rely on others for help as much.
    • Improved quality of life. You are less depressed and can live a fuller life.

As much as boxing can be rewarding on a physical, cognitive, and emotional level, it also needs to be fun and engaging. If you do not find enjoyment in the movement program you participate in, then you will not benefit from it. Find what moves you and fight for it.

On the Ropes: Battling Parkinson’s Disease from Drastic on Vimeo.

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