• Busy September

    It has been a busy September.  We started the month with a trip to the Seattle area to visit family (here we are after a great brunch at Big Fish Grill), and now we are ending the  month in Michigan where we just finished attending the Grand Challenges in Parkinson’s conference and will visit family before heading home to Sarasota.

    This month we had appointments with our new Primary Care Physicians and our new Dentist  and continued updating our home, painting some furniture and a hallway. 

    We also made a trip to Tampa to meet with my new Movement Disorder Specialist, Dr. Robert Hauser who heads up the University of South Florida Movement Disorder Clinic. Dr Hauser is involved in research and we discussed my participation in the Nilotinib study after I have been on my new medication routine at least 30 days.  What new medication routine you ask?  We are going to reduce the amount of pramipexole (Mirapex) that I take over the next month or so to see if that reduces both my daytime sleepiness and my shopping impluse control disorder (ICD).  I, of course, don’t see anything wrong with ordering items from Amazon almost daily but I was overruled by the Dr., the PA, and Mara😀

    Because of the possibility of dopamine agonist withdrawal syndrome, we will be reducing the dosage very slowly over the next several weeks.  So far (3 days) I haven’t noticed any effect yet.  Once we stabilize or completely stop the pramipexole we will look at alternatives for maintaining my dopamine level without increasing my off time.

    In between our travels we continue to work on our tennis game, playing at least 7 – 10 hours a week when it wasn’t raining – it’s been a wet September in Florida.  I recently read a guest post by Jan Jackson on the Out-Thinking Parkinson’s blog titled Tennis as Therapy for Parkinson’s.  She is playing tennis 2 -3 hours a day almost every day of the week and seems to be holding off progression of her PD symptoms.  Maybe I need to step up my time on the court!

    I also continue to cycle for PD twice a week where we continue to push the high intensity intervals for 45 minutes each time.  The need to exercise was discussed by several of the speakers at the Grand Challenges conference and the concept of HIIT was mentioned almost every time. I will cover the Grand Challenge conference in the next post. This was our third time to attend, you can read about the previous conferences here and here while you wait for the next post.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius

  • Me, a Tennis Hero?

    We met Jean Kirshenbaum when we started playing tennis here in Sarasota with a regular group twice a week.  Jean was not as mobile as some of the players but had an excellent serve and strong ground strokes and you could tell how much she enjoyed playing the game.  Jean had suffered a stoke 15 years ago but had worked hard to return to the game she loved, even if she couldn’t play at the same level she was playing at before the stroke. 

    Earlier this year Jean began to have problems with her gait, her balance and with freezing in place (sound familiar?) which have prevented her from playing with the group.  But Jean is not giving up, she writes columns for a tennis website, and recently wrote one that discussed her current conditions and what she is doing to try and overcome them.  Part of that column includes her surprise when she found out I took up tennis as part of my plan to overcome PD.  She has plans for both of us as you will see when you read her column here.  I am honored that she mentions me in her column and I look forward to seeing her back on the courts soon.

    While we have been busy the past few weeks with visits from grand children, we have continued to play tennis as much as possible and I continue to cycle whenever I can.  Yesterday I discovered a new screen on my FitBit app  that shows my heart rate during exercise.  This screen shot is from today’s cycling session which consisted of a 10 minute warmup and then we continued to add gear while surging back and forth between 80 rpm and 90 rpm.  As you can see our coach has taken the new concept of  high intensity intervals to heart and this work out kept my heart rate in the cardio zone or above for almost the entire time.  What I find most interesting is, despite my thought that I wouldn’t be able to walk out to the car, I did and now, 8 hours later, I feel great and have limited PD symptoms.  There certainly seems be something that works when you exercise at a high level even for a short period of time.  So if you have the opportunity to cycle or box or ????, do it! Exercise is the best prescription we can follow to slow the progression of PD (I know I haven’t said that recently 😆)

     

    “It does not matter how slowly you go as long as you do not stop.” – Confucius

  • Five Years Ago…

    …I received my Parkinson’s Disease diagnoses, a prescription and a 90 day followup appointment.  Yep, that was it, no handbook, brochure or even a ‘what to expect’ message.  A lot has happened since that day five years ago and most, if not all, has been chronicled on this blog which will also be five years old in a couple of weeks. 

    Starting that day, Mara and I began researching PD, reading all of the information available from the Micheal J Fox Foundation and the National Parkinson’s Disease Foundation (now merged with the Parkinson’s Disease Foundation) among many others (see the resources tab for the complete list).  We have traveled the country attending research meetings and PwP meetings including the 2016 World Parkinson’s Congress and even a week for PwP’s and care partners at the Kripalu Yoga Retreat.  We have met and become friends with many other PwP, adding them to our support team and providing support to them as necessary.

    We created a website listing resources for PD in Tennessee after finding many PwP’s had the same experience as I did, a diagnoses and a prescription and follow up appointment.  We discovered exercise was the best prescription to slow the progress of PD and I am probably in the best physical shape I’ve been in for years.  We are participants in clinical trials and served as ambassadors for the Fox Trial Finder Program. 

    Two years ago we began the Sarasota experiment after finding a strong and supportive PD community here.  After two years of renting here, we have purchased a home and are now Florida residents.  Being here allows us to easily get to exercise programs designed for PwP’s AND play tennis, a new sport that I took up just 18 months ago and now play 2 – 3 times a week.  We enjoy tennis so much we often take our racquets and a can of balls when we travel, never know when the opportunity to play might present itself.

    So today, as I start year 6, I may have PD but I’m not sitting still or waiting for the next symptom to appear.  With the support and love of my wife and care partner Mara, we continue to explore new opportunities to exercise, to support PD research and to continue to fight to slow the progression.   With the support of family and friends, we explore new opportunities to expand our horizons here in Sarasota and wherever we travel.

    I have read many blog posts that echo today’s message – Never Give Up!  Maybe the cure isn’t here yet, but in five years I have seen several new drugs approved and there are several more almost ready for prime time.  In the mean time we can delay the progression by exercising and, if possible, having a Movement Disorder Specialist as our PD doctor.  They are on top of the latest research and can provide access to the latest treatments.

    And  now on to the next five years …

    “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

     

     

     

Welcome 2018 – Another Year of Exercise

YMCA Pedaling Class Parakinsonscyclingcoach.com

It’s a new year and time to renew my resolution to continue exercising at least 4 -5 times per week.  As 2017 came to a close a new research study was published that shows high intensity interval training (HIIT) delays Parkinson’s progression.  As Daniel Corcos, one of the lead authors of the study states “If you have Parkinson’s disease and you want to delay the progression of your symptoms, you should exercise three times a week with your heart rate between 80 and 85 percent maximum.  It is that simple.”  If you query Google for High Intensity Exercise and Parkinson’s you will find an abundance of articles about this study, here is the link to one of them from Science Daily

While the need to exercise for PD patients has been shown in many studies, this was one of the first to be conducted for 6 months instead of 12 weeks.  The participants were divided into three groups, HIIT exercise, moderate exercise and no exercise.  All scored about 20 on a PD scale of 0 – 108 before the study.  When scored after the 6 months The HIIT group showed no change while the moderate group got worse by 1.5 points and the no exercise group worsened by 3 points or about a 15% change.

Although  the primary exercise used during this study was the treadmill, Kathy, our Parkinson’s cycling instructor immediately figured that we can step up our cycling program to include high intensity intervals and start raising our aerobic fitness level.  So, even though many of us thought we were doing high intensity training already (well at least I did), she started pushing us to reach the 80 – 85% heart rate after Thanksgiving.  Almost every workout has incorporated HIIT and I am already starting to see a change in just 6 weeks.  The first few sessions I found I had to lower the gear to finish the workout.  But each time I felt I was getting stronger and this week I was able to increase instead of decrease the gear and still maintain the required 80 – 90 RPM.  I am happy with that progress and I am noticing a reduction in my symptoms after exercise including not feeling ‘off’ a half hour or so before it’s time to take my medicines on the day of exercise.

But I wondered what is happening to my aerobic fitness?  Then I discovered that my Fitbit app is keeping track of my cardio fitness! The app determined my heart rate zones and then uses those zones and my resting heart rate to compute a cardio fitness score.  As you can see in this screen shot on the left, Fitbit has determined that, for me,  a heart rate greater than 126 is my peak zone and my cardio zone is 104 – 125.  The peak range is approximately 80% of my maximum heart rate so anything above that would be considered high intensity exercise.

The app also graphs my heart rate for the entire day so I can tell from that graph how long I was in the peak zone.  The screen shot on the left is for 1/2/18 which includes a cycling class. 

November 16, 2017
January 2, 2018

So I was in the ‘zone’ for 9 minutes during the class which corresponds to intervals where we pushed up to 85 or 90 RPM for short periods.

And here are screen shots showing my cardio fitness as computed by Fitbit on November 16, 2017 and January 2, 2018. So, in theory, I’ve already improved my Cardio Fitness by a point since we started the HIIT.  But just as important is that fact that either score is considered excellent by Fitbit where the average score for men over 60 is 27.2 – 31.0. 

 

 

 

Between cycling twice a week, playing tennis 2 -3 times a week and the Dance for PD class I am staying fit, slowing the progression of my Parkinson’s and having fun.  We will revisit my cardiac score in a month or so to see if the trend continues or maybe I’m maxed out!

So my New Year’s resolution this year is the same as last year, keep exercising and keep fighting PD. By the way, if you are interested in Pedaling for Parkinson’s, check out this video from the Sarasota YMCA website of one of Kathy’s classes and watch us having fun doing intervals!

“It does not matter how slowly you go as long as you do not stop.” – Confucius
 

Welcome 2018 – Another Year of Exercise

YMCA Pedaling Class Parakinsonscyclingcoach.com

It’s a new year and time to renew my resolution to continue exercising at least 4 -5 times per week.  As 2017 came to a close a new research study was published that shows high intensity interval training (HIIT) delays Parkinson’s progression.  As Daniel Corcos, one of the lead authors of the study states “If you have Parkinson’s disease and you want to delay the progression of your symptoms, you should exercise three times a week with your heart rate between 80 and 85 percent maximum.  It is that simple.”  If you query Google for High Intensity Exercise and Parkinson’s you will find an abundance of articles about this study, here is the link to one of them from Science Daily

While the need to exercise for PD patients has been shown in many studies, this was one of the first to be conducted for 6 months instead of 12 weeks.  The participants were divided into three groups, HIIT exercise, moderate exercise and no exercise.  All scored about 20 on a PD scale of 0 – 108 before the study.  When scored after the 6 months The HIIT group showed no change while the moderate group got worse by 1.5 points and the no exercise group worsened by 3 points or about a 15% change.

Although  the primary exercise used during this study was the treadmill, Kathy, our Parkinson’s cycling instructor immediately figured that we can step up our cycling program to include high intensity intervals and start raising our aerobic fitness level.  So, even though many of us thought we were doing high intensity training already (well at least I did), she started pushing us to reach the 80 – 85% heart rate after Thanksgiving.  Almost every workout has incorporated HIIT and I am already starting to see a change in just 6 weeks.  The first few sessions I found I had to lower the gear to finish the workout.  But each time I felt I was getting stronger and this week I was able to increase instead of decrease the gear and still maintain the required 80 – 90 RPM.  I am happy with that progress and I am noticing a reduction in my symptoms after exercise including not feeling ‘off’ a half hour or so before it’s time to take my medicines on the day of exercise.

But I wondered what is happening to my aerobic fitness?  Then I discovered that my Fitbit app is keeping track of my cardio fitness! The app determined my heart rate zones and then uses those zones and my resting heart rate to compute a cardio fitness score.  As you can see in this screen shot on the left, Fitbit has determined that, for me,  a heart rate greater than 126 is my peak zone and my cardio zone is 104 – 125.  The peak range is approximately 80% of my maximum heart rate so anything above that would be considered high intensity exercise.

The app also graphs my heart rate for the entire day so I can tell from that graph how long I was in the peak zone.  The screen shot on the left is for 1/2/18 which includes a cycling class. 

November 16, 2017
January 2, 2018

So I was in the ‘zone’ for 9 minutes during the class which corresponds to intervals where we pushed up to 85 or 90 RPM for short periods.

And here are screen shots showing my cardio fitness as computed by Fitbit on November 16, 2017 and January 2, 2018. So, in theory, I’ve already improved my Cardio Fitness by a point since we started the HIIT.  But just as important is that fact that either score is considered excellent by Fitbit where the average score for men over 60 is 27.2 – 31.0. 

 

 

 

Between cycling twice a week, playing tennis 2 -3 times a week and the Dance for PD class I am staying fit, slowing the progression of my Parkinson’s and having fun.  We will revisit my cardiac score in a month or so to see if the trend continues or maybe I’m maxed out!

So my New Year’s resolution this year is the same as last year, keep exercising and keep fighting PD. By the way, if you are interested in Pedaling for Parkinson’s, check out this video from the Sarasota YMCA website of one of Kathy’s classes and watch us having fun doing intervals!

“It does not matter how slowly you go as long as you do not stop.” – Confucius
 

Tag: Research

  • Welcome 2018 – Another Year of Exercise

    Welcome 2018 – Another Year of Exercise

    YMCA Pedaling Class Parakinsonscyclingcoach.com

    It’s a new year and time to renew my resolution to continue exercising at least 4 -5 times per week.  As 2017 came to a close a new research study was published that shows high intensity interval training (HIIT) delays Parkinson’s progression.  As Daniel Corcos, one of the lead authors of the study states “If you have Parkinson’s disease and you want to delay the progression of your symptoms, you should exercise three times a week with your heart rate between 80 and 85 percent maximum.  It is that simple.”  If you query Google for High Intensity Exercise and Parkinson’s you will find an abundance of articles about this study, here is the link to one of them from Science Daily

    While the need to exercise for PD patients has been shown in many studies, this was one of the first to be conducted for 6 months instead of 12 weeks.  The participants were divided into three groups, HIIT exercise, moderate exercise and no exercise.  All scored about 20 on a PD scale of 0 – 108 before the study.  When scored after the 6 months The HIIT group showed no change while the moderate group got worse by 1.5 points and the no exercise group worsened by 3 points or about a 15% change.

    Although  the primary exercise used during this study was the treadmill, Kathy, our Parkinson’s cycling instructor immediately figured that we can step up our cycling program to include high intensity intervals and start raising our aerobic fitness level.  So, even though many of us thought we were doing high intensity training already (well at least I did), she started pushing us to reach the 80 – 85% heart rate after Thanksgiving.  Almost every workout has incorporated HIIT and I am already starting to see a change in just 6 weeks.  The first few sessions I found I had to lower the gear to finish the workout.  But each time I felt I was getting stronger and this week I was able to increase instead of decrease the gear and still maintain the required 80 – 90 RPM.  I am happy with that progress and I am noticing a reduction in my symptoms after exercise including not feeling ‘off’ a half hour or so before it’s time to take my medicines on the day of exercise.

    But I wondered what is happening to my aerobic fitness?  Then I discovered that my Fitbit app is keeping track of my cardio fitness! The app determined my heart rate zones and then uses those zones and my resting heart rate to compute a cardio fitness score.  As you can see in this screen shot on the left, Fitbit has determined that, for me,  a heart rate greater than 126 is my peak zone and my cardio zone is 104 – 125.  The peak range is approximately 80% of my maximum heart rate so anything above that would be considered high intensity exercise.

    The app also graphs my heart rate for the entire day so I can tell from that graph how long I was in the peak zone.  The screen shot on the left is for 1/2/18 which includes a cycling class. 

    November 16, 2017
    January 2, 2018

    So I was in the ‘zone’ for 9 minutes during the class which corresponds to intervals where we pushed up to 85 or 90 RPM for short periods.

    And here are screen shots showing my cardio fitness as computed by Fitbit on November 16, 2017 and January 2, 2018. So, in theory, I’ve already improved my Cardio Fitness by a point since we started the HIIT.  But just as important is that fact that either score is considered excellent by Fitbit where the average score for men over 60 is 27.2 – 31.0. 

     

     

     

    Between cycling twice a week, playing tennis 2 -3 times a week and the Dance for PD class I am staying fit, slowing the progression of my Parkinson’s and having fun.  We will revisit my cardiac score in a month or so to see if the trend continues or maybe I’m maxed out!

    So my New Year’s resolution this year is the same as last year, keep exercising and keep fighting PD. By the way, if you are interested in Pedaling for Parkinson’s, check out this video from the Sarasota YMCA website of one of Kathy’s classes and watch us having fun doing intervals!

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
     
  • Thanksgiving

    Happy Thanksgiving Holiday! 

    It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

    Reminder number one:  November is National Caregivers  Month.  Yes the month is about over but I know that you, like me, are  thankful for your care partner(s) every day of the year.  Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD.  Download load a copy at this link.

    Reminder number two:  Tuesday the 28th is Giving Tuesday.  This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched.  For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors.  Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

    Item of interest number one:  This article  Neurological disorders – including Parkinson’s – are leading source of disability globally  points out that PD is becoming pandemic and we must take action to find a cure.  This summary is worth the few minutes it will take you to read.

    Item of interest number two:  The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure.  Click on the link above to get more information and join us.

    Item of interest number three:  The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan.  Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC.   Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally.  Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate.  Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

    On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!

  • Walking for Parkinson’s Research

    Walking for Parkinson’s Research

    Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN.  The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!

    We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.

    We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.

     
    This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.
     
    Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist.  I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .
     
    I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius