• Parkinson’s Awareness Month

    As I noted in the previous post, April is Parkinson’s and Autism Awareness Month and I warned you that I will try to post more frequently this month.  Who knows, that might get me to post more frequently every month.

    For those who are wondering about my interest in Autism, I have a grandson, Charlie, who was diagnosed as being on the Autism Spectrum when he was 3.  He is 14 now and will be going to high school next year. The work done by Autism Speaks and other organizations to increase Autism awareness and research were instrumental in his early diagnoses and subsequent treatment. The information that these organizations provide to caregivers and patients is invaluable. We have found the same to be true of the Parkinson’s organizations.

    For those of you that supported the Parkinson’s Action Network (PAN) campaign to remove the Medicare therapy caps, I and PAN thank you for your support.  Unfortunately Congress ‘kicked the can’ down the road and passed an extension of the current law for another year, but we will keep trying!

    For those of you wondering what went on this week, it wasn’t all fun!  I was originally scheduled for a colonoscopy the Monday after the Superbowl. I decided to reschedule it so the preparation and fasting would not interfere with me watching the Broncos win (well it was a good idea at the time). The rescheduled event was for this Monday so I went through the fasting and other prep on Sunday but when Monday morning rolled around, things were not as clean as they should be so….I did it the fasting and prep again on Monday so they could redo things Tuesday morning.  This time it worked and no problems were found which was good news.  Also because having Parkinson’s makes you more likely to have melanoma, I had the first of my now annual visits with the Dermatologist, again all was well.

    On the positive side, we had several nice days resulting in evenings on the screen porch enjoying the lake, the sunset and music.  Now that things are warming up, I’m ready for the lake level to rise so I can do some fishing and boating.

    Tomorrow is the local Parkinson’s Unity Walk and we are hoping for nice weather.  We appreciate the support we have received, thank you.  I’ll let you know how it all goes in the next post.

  • Support

    When I was first diagnosed,  I had mixed feelings about attending a support group.  I wondered if we sat in a circle and I said “Hi, I’m Tom and I have Parkinson’s”  (Hiiii Tom).  Was there a 12 step program for dealing with Parkinson’s? 😉  And I was worried that seeing PWP’s with a wide range of  symptoms would be like seeing my future.  But as I learned more about Parkinson’s I realized that it is a progressive disease that affects everyone of us in different ways and no two seem to be alike.  And, as we learned at the Kripalu retreat and in Florida,  it is helpful to meet other PWP’s and caregivers to trade experiences, share coping strategies, and for a sense of community

    So, last week we attended two local support groups, The East Tennessee Parkinson’s Support Group and the local Kingston Support Group.   Both groups meet at a local church, both meetings included lunch and both provided us with a positive experience.

    The East Tennessee Parkinson’s Support Group, PK Hope is Alive, met on Tuesday in Oak Ridge.  There were probably 60 – 70 people in attendance pretty much evenly divided between PWP’s and caregivers.  We opened with some voice exercises led by one of the PWP which included some singing. I didn’t have a signing voice before Parkinson’s and it sure hasn’t improved, but it was fun.  After lunch they introduced Dr.Scott Wylie Ph.D from Vanderbilt University Movement Disorders Clinic, a National Parkinson’s Foundation Center of Excellence. He gave a fascinating presentation on “Cognitive Changes in the Parkinson’s Patient”.  He and his research group are doing research about the effect too little or too much dopamine can have on cognitive functions.

    Dr Wylie pointed out that James Parkinson, in his 1817 ‘Essay on the Shaking Palsy” described the disease as ” Involuntary tremulous motion, with lessened  muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.” (Underline added) He expects that last bit would be revised if James Parkinson were alive today.

    While most of us were aware that lack of dopamine is at the root of our motor symptoms, his research has shown that it may also have an impact on our cognitive symptoms too. I hope to get a copy of his presentation and will provide more information in a later post. After the presentation, he answered questions from the group which meant we didn’t get an opportunity to break out into smaller groups of PWP’s and caregivers for discussion but the meeting was fun and we plan to attend again.

    The local Kingston Support Group met on Wednesday.  We first heard about this group during a Tai Chi lesson when someone mentioned that they were aware a group met in the same space but didn’t know the day or time.  So I had planned to call the church when we returned from Florida to get the information but, as luck would have it, the Monday edition of our local paper made mention of the meeting’s day and time.  We found out later that they had been trying to get it published for quite awhile and Monday was the first time it was finally inserted in the community calendar page.

    This group was quite a bit smaller than the Oak Ridge group.  There were about sixteen attendee’s including another couple who were there for the first time after seeing the mention in the paper.  We sat around three tables and had a great opportunity to discuss symptoms, medications, exercises and care giving tips while enjoying lunch.  After lunch we had a short presentation by the founder of the group who is a speech pathologist and had just returned from a conference.  She gave us some tips on how to stand erect and a simple stretching routine that will strengthen the neck muscles and help prevent problems with swallowing.  Again an interesting and informative meeting and we will attend again.

    So I didn’t have to announce my problems to the group(s) and I didn’t see my future, but I did get a lot of good information and a chance to meet other PWP’s and caregivers and exchange information.

    We have been working at keeping up the exercise routine since we have been home and are doing pretty well, averaging about an hour a day.  We continue to walk or ride the bike and try to include either Tai Chi or Yoga routines everyday.  We purchased another Tai Chi DVD that is more advanced and not quite as easy to follow but we are getting there. Yoga continues to be difficult with my stiff muscles but I know continuing it will help me to gain flexibility and it will get easier (I hope).

    April is Parkinson’s Awareness Month and I hope to post informational items as the month progresses.  We will be walking in the East TN Parkinson’s Walk on April 5th.  This walk is the local version of the Parkinson’s Unity Walk held in NYC April 26th.  One hundred percent of the funds raised are donated to Parkinson’s research foundations.  You can find out more about the walk by clicking here or if you wish to support our team, you can click here.

    April is also Autism Awareness Month, another cause that is important to me, so next month’s posts should be chock full of information!

  • Beach Time is the Best Time!

    We are on our third week of hanging at the beach in Siesta Key, FL  We were scheduled to leave on March 1 but decided to add one more week.  We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.

    While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.

    We have also joined up several times with Joel Gordon and his wife Rabbi Melissa Wenig whom we first met at the Kripalau Wellness Retreat last October. They came down from Cambridge, MA in January and are staying until May. It has been a great opportunity to discuss how Parkinson’s has impacted our lives with another PwP.  One of our outings was to the Venice Rookery, a small island on a small lake in Venice where hundreds of Egrets, Herons and other birds roost at night.  We went at sunset and watched the flocks fly in from where ever and take up residence in the bushes on the island.  This picture gives you an idea but doesn’t do justice to the whole experience.

     

    After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!

    The warm weather has been  great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice.  We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch!  I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.

    We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim.  The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂

    In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach.  We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!

    We head home Saturday and hope that spring arrives at the same time 🙂

    Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

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