• “The Team”

    I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

    Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

    Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

    And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

    As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

    Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

  • West Coast Travels

    Hello from San Diego! We have had a wonderful trip to the Southwest and West Coast.  We spent the first couple of days in Tucson with Karen and Jerry, friends from Bay City, MI.  Jerry was diagnosed with Parkinson’s at about the same time as I was so we spent some time comparing our different symptoms, medications, and such. As always, I found it interesting how each of us experience different PD symptoms, what a crazy disease.

    We explored Tucson and the surrounding area for a couple of days before leaving for San Diego.  Karen and Jerry were excellent hosts and we had a great time hiking in Sabino Canyon, walking around downtown Tucson and enjoying the happy hour at the Ritz Carlton at Dove Mountain where we could hear echos from a flutist playing Indian flutes across the canyon from the outside patio.

    We left Tucson and drove to San Diego where Ryan, Sarah and Julian were in the process of moving out of their apartment and into their new residence a few blocks away.  They had just started the move and we got to help with emptying boxes, putting away household items, etc.  and still found time to attend a couple of Julian’s Lacrosse games, go to the beach for sunsets and nice walks, and visit with Sarah’s sister Allison and her husband Kevin and their new little baby, Jack, born two days before we got here.  We have enjoyed several great meals, a trip to San Clemente, and a great lunch at the Stone Brewery World Bistro – Liberty Station in San Diego.  It has been a great visit and we are glad to enjoy their company and to help them with the move.

    I’ve been on the new increased medication dose for about a week and a half and have seen good improvement with my gait and balance.  Also I haven’t had problems with fatigue despite the busy days.  I have been keeping up with my research and saw an interesting article today about the benefits of acupuncture for balance and gait problems.  It certainly sounds promising and worth looking into further.  I applied for two clinical trials last week but didn’t meet all of the criteria for either one this time around.  Lack of research participants is a big problem and I am registered with the Michael J Fox Trial Finder to get notifications of any new trials that I might qualify for so maybe next time.  I urge all you PWPs out there to register, we need to support the research being done to defeat Parkinson’s.

    We are off to Sierra Vista, AZ next for a few more days of visiting with friends before we return home.  In the meantime, don’t forget it is still Parkinson’s Awareness Month. This video by Davis Phinney, former Professional and Olympic bike racer with Parkinson’s, is inspirational and worth watching.  It is about 23 minutes long and was filmed at one of his Victory Summits that he holds around the country.  You can view the video here .  Until next time, remember It Is What It Is!

  • Will This Winter Ever End?

    Hello from cold and snowy Eastern Tennessee, where we are forecast to set a new record low tonight, 28 degrees, which will do wonders for all the fruit trees and new plants just coming up after a nice warm typical April week.  But we have a plan, we are leaving for Tucson tomorrow morning where it is forecast to be 90 degrees!

    The East Tennessee Parkinson’s Unity walk was great, a nice turn out on a cool and windy Saturday morning, about 150 walkers.  Several nice exhibits, a nice send off talk from a local Neurologist and away we went for a nice 1.5 mile walk around the park in Oak Ridge.  Another great opportunity to meet and talk with other PWP’s.

    I had an appointment with my Neurologist today and we have decided to increase the amount of my medication to see if we can improve my balance and fine motor skills.  We discussed when to switch to the ‘gold standard’ drug, Levadopa.  He felt that as long as I am getting effective response from my current drug with limited or no side effects, we should hold off, so that is the plan for now.

    As you have noticed, I still haven’t posted a list of blogs I follow, but one I follow Parkinson’s Journey, by Sherri Woodbridge, has a list of blogs as part of her Parkinson’s Awareness Month posts and I was pleased to see mine listed.  You can view her entire list here , and if you have time, I highly recommend reading her other posts for April, they have all been informative and I look forward to each daily post.

    As I mentioned in the opening, we are off to Arizona to visit with friends and to San Diego to visit with my son and his family so my next post will be from the western side of the country.  Until then, remember, It Is What It Is!

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