• Beaching, Exercising and Blogging!

    Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

    Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

    On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Increasing the Exercise Routine

    Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.
    At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.
    This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi.  During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace.  I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
    I have noticed reduced rigidity and shuffle along with the  improved walk times over last
    year’s beach visits.
    Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.
    This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week!  Thanks for reading.
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Patient Centric Care in Action

    For the last few months, Mara and I have been discussing changing neurologists with the idea of being seen by a Movement Disorder Specialist (MDS). I was seen by a MDS when we went to U of FL last year we felt that it was too far of a drive for regular appointments. The Vanderbilt Movement Disorder Clinic in Nashville is also an National Parkinson Foundation (NPF) Center of Excellence, they conduct a lot of Parkinson’s research and it is a two hour drive instead of ten, so we decided that was where I would go. So this week I met with Dr. Thomas Davis, a MDS and clinical researcher and Director of the Vanderbilt Movement Disorder Clinic. It was a very positive experience and we were quite impressed with Dr Davis and the Vanderbilt Movement Disorder Clinic staff.

     

    After a simple check in process that took all of 5 minutes and only required my electronic signature on the usual forms, that’s right, I did not have to fill out any health history forms, who to contact, etc.! I had barely sat down when a nurse called me into an interview room where she took my BP, weight, and medical history once again without me having to fill out a form! She then took me to the examination room where we met Dr. Davis.

     

    During the meeting with Dr Davis we discussed my PD history, what medication I was on and how it was working, what other symptoms I was having plus he performed the usual PD tests, finger and toe tapping, walking, etc. He also tested  my cognitive skills and once again I passed! We then discussed my medication routine and he recommended I start taking levadopa/cardidopa along with a reduced dose of Mirapex four times a day instead of three. We were happy with this recommendation as it seemed the Mirapex has not been as effective in reducing my rigidity and I am taking the maximum dose. He also noted that exercise is still the best prescription for PwP and reducing the rigidity and other symptoms will allow me to up the exercise routine. The appointment lasted about 50 minutes and we came away feeling that he and the staff cared about me as a person and a patient and we had made the right decision to transfer to Dr Davis.

     

    We also met with Kelly Arney, research outreach coordinator, whom I had been in contact with last year about a clinical trial sponsored by NPF to track the effects of treatment. I did not qualify then because the trial required participants to be seen by the Clinic, but now that I am a patient, I should be able to participate beginning with my next visit at the end of April. We also discussed upcoming clinical trials with both Dr Davis and Kelly and they will contact me if I meet the qualifications.

     

    When I checked out, they had me sign up for access to their electronic health record system which gives me access to all of my records and a way to email Dr Davis. Again the process was simple and an employee walked me though the sign up at a terminal in the waiting area, then gave me full access to the system.

    The NIH defines patient-centered care as follows: “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The care we received at the Vanderbilt Medical Center Movement Disorder Clinic certainly fit the NIH definition.

     

    And the positive experiences continued because Friday we checked into our ‘home away from home’ a villa on Siesta Key! Yes that’s right, we are at the BEACH! We will be attending a Parkinson’s symposium on Saturday and I also plan to sign up for the Big and Loud program while we are here so I will have plenty to blog about next time. Until then don’t forget to sign up for the Fox Trial Finder, we all have a stake in finding a cure.

     

    “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