How much time do you really spend going to doctors?

Experience says to make your appointment so you’re the first one on the schedule in the morning or the first after their lunch hour.

Tom Sheppard

Do you ever feel like all you do is go to doctor’s appointments?  Feel like a drug addict as you take meds all day long ?   Make sure you are getting your daily dose of exercise? Sometimes it seems that there is no time left in your days to do anything else.

The other day I read a blog post on the Davis Phinney Foundation website by Tom Sheppard about making the most of your visits to your doctor.  Tom does a wonderful job outlining 5 steps you can take maximize your 15 minutes with your doctor.   As I read his list of doctors appointments in one year, I started to think about how much time I spend on doctors appointments and self-care.  You can easily fill your days with unwanted tasks, all in the pursuit of living well with PD.

I knew I was seeing a lot of doctors, but when I actually looked at my calendar, I realized that I had more appointments than I thought I did. To sum up, in 2017 I saw

  1. 25 doctors
  2. 36 appointments
  3. 9 Physical Therapy appointments,
  4. 2 procedures
  5. 2 MRI’s,  and other miscellaneous appointments.

We also traveled a lot, for a total of 17 weeks.  Which means that I saw at least one doctor a week when I was home.  It seems a bit excessive, doesn’t it?

Self care also includes exercise, which is essential, averaging an hour a day.  In addition, we need to make sure that we have all of the  medications that we take throughout the day, keep up with our health insurance claims and more.  Record keeping is also an essential part of self care.  The bottom line it that we spend a lot of time managing our own care.  You must be an advocate for yourself to get the care you need.  If you don’t have someone to help you, it is easy to become overwhelmed.

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On a different topic, I don’t normally like to endorse products on my blog.  But after a friend fell and ended up in the emergency room and no one there was familiar with her PD meds, I both decided it was time to get a medical ID bracelet.  I found a great selection of fashionable ID bracelets on a website called Lauren’s Hope.  I get a lot of compliments on my new “bracelet”.   Check out their website by clicking on the photo here:

Medical ID Bracelet

Just keep on moving…..

Nearly two weeks ago, Mr. Twitchy and I embarked on a two week trip to Israel with friends.  This is the fifth year in a row that we have traveled together and they have seen me at my worst, before starting Sinimet, and at my best.  We have reflected on how well all four of us have done on these trips, which often move at a very fast and strenuous pace. We try to fit way too much in to these trips, because basically, we don’t want to miss anything!

We have traveled all over Israel, from the northern border

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Walking on the ruins at Beit She’an

to the south in Eilat, including a day trip to Petra, Jordan.  We jokingly call our free days our “Days at Sea” since last year we took a Panama Canal cruise that had 9, count em, 9 days at sea.  Being the type A personality that I am, I dreaded those days at sea.  But they turned out to be the best part of the cruise.

Yes, we have enjoyed the few “days at sea”, but the rest of the time we were running around like maniacs, checking to make sure that we didn’t miss a thing and to see which day had the most steps.  Last Monday in the Old City of Jerusalem was the winner as it topped 20,000 steps!

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The Treasury at Petra

But what really made us feel good was the fact that we walked uphill for 1 1/2 mlles yesterday in Petra, without any signs of fatigue, passing much younger people who probably thought that they were in much better shape than us old people. They were huffing and puffing their way up stuggling to keep our pace, and we were just fine.

Which just goes to show you that exercise definitely benefits everyone, no matter what age you are.  And for those of us with PD, it really is essential.  Without exercise I could not have kept up with the group, nor would I have felt as good as I did. As one of my PD boxing pals said so eloquently:  “I am in the best shape I have ever been.  And it is all because of Parkinson’s.”

Photos by Sharon Krischer

Working up a Sweat

Intense treadmill exercise can be safe for people who have recently been given diagnoses of Parkinson’s disease and may substantially slow the progression of their condition.  The New York Times.

A lot has happened in the Parkinson’s world this past year.  We have heard a lot about the connection between the gut and Parkinson’s.  And faulty genes, mitochondria, stem-cell treatments, ultrasound treatments, repurposing of drugs, and on and on.  Each month brings some new theory that could just be the breakthrough we were looking for. A month later, there is yet another new finding that could be the one.

But let’s not forget about exercise.  If you have been following me, you know that I exercise a lot.  I go to Boxing for PD classes, yoga and still manage to play some tennis. Last week’s big news was a study published in the NY Times about the benefits of intense exercise for PD.  There have been a number of studies over the past 10 years that have looked at exercise for PD, with varying outcomes.  But this one was apparently the first set up as a clinical trial.   For the new study, which was published in JAMA Neurology, the researchers decided to treat exercise as if it were a drug and carefully track the safety and effectiveness of different “doses” of exercise in a formal Phase 2 clinical trial.  In the trials, those patients in the high-intensity group had better outcomes.   Their findings:  “High-intensity treadmill exercise may be feasible and prescribed safely for patients with Parkinson disease.”  As someone who emphasizes exercise, this did not surprise me.

About six months ago, Mr. Twitchy and I acquired a Peloton Bike.  In case you’ve managed to miss the much-played commercials for Peleton showing a mom exercising on her Peloton Bike in her living room,  while her kids play quietly nearby (whoever dreamed this up does not have small children), the Peloton Bike is a Spin Bike for your home.   It’s not cheap and there is a monthly fee for “attending” classes (either live or “on demand”)  You can log into numerous classes led by cute, young, and way-too-fit instructors, who guide you through a workout while you watch on the big video screen attached to the bike.

If only riding my Peloton would make me look like her!

Classes range from at 10 minutes to 90 minutes long.  The instructor encourages you to move to the beat of the music and to adjust your resistance to increase or decrease the intensity (which simulates biking up and down hills).

This is not a commercial for Peleton.  While I have never been a big fan of exercise bikes (or real bikes for that matter), this is fun!  And it is some of the most intense exercise I have done.  Being competitive by nature, I try to keep up with that cute guy on the screen, and the cadence and resistence calls he makes.  Although not always successfull, I can feel myself improving and I have worked my way up to 20 minute classes, frequnetly ready to drop at the end of the session, but stronger for the effort.  I never went to the spin classes at the gym.  The thought of going to one of those classes in a hot sweaty room with 25 other people was terrifying, so I avoided them.  Now, in the privacy and comfort of my own home, I can choose whatever class I want, and quit if I want to, or scream at the instructor, or at myself,  when I can’t keep up.  The best part, is that I am getting the benefits of intense exercise that the experts now say will keep me going and going and going…….

WARNING:  When starting any form of strenuous exercise, please consult your doctor first.   This is NO exception.  In fact, you may want supervision by a trainer or Physical Therapist until you learn what you can do on the Peleton or any other resistance  training bike. It is much too easy to overdo it, which could lead to other problems.

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