• World Parkinson’s Day – 2019

    April is Parkinson’s Awareness Month and this Thursday, April 11th, is World Parkinson’s Day. This year, our cycling group at the YMCA decided to do something to increase awareness of PD. We are moving our usual Thursday Pedaling for Parkinson’s class from from the cycling class room to the lobby of the Y. We have invited all of the local neurologists and Movement Disorder Specialists,along with local Parkinson’s groups and the media to come and see what Pedaling for PD is all about. So if you are in the Sarasota area this week, stop by the Evalyn Sadlier Jones YMCA at 8301 Potter Park Dr at 10am to see Pedaling for Parkinson’s in action.

    Those of you who have been following this blog for very long know that I feel that this program has slowed the progression of my PD. When I miss a class or two I have seen a noticeable change in the time my medication lasts. The medication seems to wear off sooner than usual and take longer to ‘kick in’ after I take a new dose. I know I have pushed exercise over and over in this blog but I can’t emphasize it enough. There are many opportunities to exercise besides cycling or playing tennis – you just need to find one you like (or dislike the least) and stick with it for a month and see if you don’t agree, exercise is the key ingredient to fight PD.

    Speaking of medication, I was doing great on the new regime of two Rytary and 1/2 a tablet of Mirapex 5 times a day until a couple of weeks ago when it suddenly stopped working so well. I would take the 1st dose of the day and it worked perfectly but when I took the second dose it would sometimes have the opposite effect, causing me to walk slowly with limited arm movement as though I was completely unmedicated. This would last up to 2 hours and then I experienced “wearing on” instead of wearing off as the meds finally kicked in.

    So I emailed my Dr and while waiting for his response did what many of us do, researched the internet for other people who have experienced the same effect and then started experimenting with different dosages and the timing of the dose. I am getting pretty good results reducing the Rytary to 1 for doses 2 and 4 but I will keep you posted as this saga continues. In the meantime today my ninety day supply of meds arrived, I need a shelf just for the Rytary 😀

  • Happy New Year!

    Well maybe it should read Happy Chinese New Year! It’s February already and I’m just getting to my first post for the new year! I hope everyone had a great holiday season. We had a great time with family over the Christmas/New Year holiday which included a trip to Disney World to celebrate New Year’s Eve.

    Disney World


    During the busy holiday season, we tried to keep up with our exercise schedule, cycling two days a week, playing as much tennis as possible and attending the Dance for PD class every week. I continue to enjoy playing tennis and even played in a men’s double tournament here in our community finishing in the middle of the pack.

    January included a visit to my Neurologist. While I am doing well I was noticing that my medication wearing OFF anywhere from 30 – 60 minutes before the next dose, particularly when the next dose occurred while I was exercising. We discussed two options, change the timing so I would take more Sinemet or try Rytary, an extended release version of Levodopa/Carbidopa.

    We decided to try the Rytary and I was given a sample to take once a day in the morning for a week. After the initial week I found that ON time was at least 30 – 60 minutes longer and some days I noticed no wearing off at all between doses.

    So I reported my findings back to my Doctor and we decided to go ‘full bore’ and replace my Sinemet tablets with the Rytary on a every 4 hour schedule. So far I am happy with the results with only occasional OFF periods, usually because I didn’t take them on schedule 🙂 I’ll keep you posted as I continue this new regimen.

    On the research front, if you are interested what’s coming up in 2019, I highly recommend you read “The Road Ahead: Parkinson’s Research in 2019” by Simon Stott over at the Science of PD blog. He expects that several clinical trials will have some data to report during the year and several promising projects will start. Click here to read.

    One last note, I have added a link on the website to a document I prepared recently for a friend of a friend who had just been diagnosed with PD. It contains my thoughts about what to do after that initial diagnoses, lots of links to sites I like, and my thoughts / recommendations about exercise, finding a Movement Disorder Specialist, etc. Click on the link in the Now What? box at the top right to view, print or download.

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


  • Rallying, Parkinson’s Movement Website, Care Partners Month, and Giving Tuesday!

    Yep, as you can tell by the title, this a catch up post lightly touching on many topics.  For various reasons, it has been tough to find time for writing but I have a chance today so will try to cover all of these topics (and maybe more) in this post. Let’s get started!

    Rallying to the Challenge – 2018

    As you might recall from my last post, we had just attended the Grand Challenges in PD meeting in Grand Rapids MI.  This is a two day meeting that brings together scientists, clinicians and people with Parkinson’s to explore the latest in  Parkinson’s disease research. The meeting is hosted by the Van Andel Research Institute and includes a parallel meeting for PwP’s hosted by Van Andel and The Cure Parkinson’s Trust.   This is one of the few meetings that brings us all together and gives the  Parkinson’s community a chance to provide input impacting ongoing and planned research.  Even better, we got to say hello to many old friends while making many new friends as the meeting progressed.  At the end of the meeting, the Cure Parkinson’s Trust presented the Tom Isaacs Award to two outstanding individuals, Professor Bas Bloem of the  Netherlands who founded ParkinsonNet, an innovative PD care program and Simon Stott, who publishes the Science of PD  Blog about current research in PD which I have mentioned in previous posts. 

    It was a great meeting and you can read more about it here and here.  Next year’s meeting is set for August 21 and 22 in case you would like to attend, click here for more information.

    Parkinson’s Movement Website

    The Cure Parkinson’s Trust sponsors the Parkinson’s Movement website which is maintained by PwP’s for PwP’s.  This website has recently had a total makeover and I highly recommend  you add it to your list of sites to visit on a regular basis.  The site has information about on going research and provides opportunities to get involved in research or share your insights.  They have a section called Hype vs Hope where they ‘fact check’ recent news stories, claims of a cure, etc.  They also have have a large list of  PD advocates listed along with their country of residence, the topics they advocate for and other information.  Check it out here.

    Care Partners Month

    November is National Care Partners Month and I know that you, like me, are thankful for your care partner(s) everyday of the year.  But this is a good time to remind you and your care partner that there are a lot of resources available for care partners including the Caring and Coping guide written for care partners for any stage of PD and available for the Parkinson’s Foundation.  You can download a copy or order a paper copy here

    Giving Tuesday

    Tuesday the 27th 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, after successfully raising one million dollars last year,  the Michael J Fox Foundation is shooting to raise two million dollars this year 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.

    (And Maybe More)

    Ben Stecher who writes the Tomorrow Edition blog has started a 9 part series about the Search for a Cure.  The first part was just published and can be viewed here.  Ben has traveled the world interviewing researchers, medical professionals and others about what they are doing and what the impact might be on the search for a cure, what the cure might look like and when it might happen.  So, another recommendation, sign up to follow Ben’s blog and his search for the cure.

    Dr Ray Dorsey at the University of Rochester in New York is conducting a web based study to see if using a computer with a webcam and microphone will provide sufficient information for patient followup.  The entire study is web based and takes about 10 – 15 minutes.  It requires a computer with webcam and the Chrome browser but it is quick and easy and a chance for you to participate in a clinical trial without leaving your house.  You can get more information and participate in the trial at this website.

    OK  that wraps it up for this post.  I hope everyone has an enjoyable Thanksgiving Holiday!

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

IT IS WHAT IT IS!

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Other Posts

IT IS WHAT IT IS!

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Other Posts

Catching Up

Written by

Tom Eckhardt

in

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

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