• 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

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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

 

 

 

 

 

 

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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

 

 

 

 

 

 

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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