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 😀
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.
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
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 has been over 4 months since my last post and it will take a couple of posts just to catch you up on what’s been happening this summer. But first I wish to pay tribute to Tom Isaacs, co-founder of the Cure Parkinson’s Trust in the UK, who passed away suddenly May 31st at the age of 49.
We first met Tom at the Rally to the Challenge held at the Van Andel Institute in Grand Rapids in 2014 and again in 2015. In 2016 we were present at the World Parkinson’s Congress in Portland where Tom received the award for Distinguished Contributions to the Parkinson’s Community.
Each time we came away inspired by his vision, by his energy and his sense of humor. Tom always had a smile, always had a new idea, and was always leading the way to a cure for PD. His optimism and enthusiasm were contagious and his boundless energy put the Energizer Bunny to shame. It is hard to picture a world without Tom Isaacs and his determination to find a cure for PD.
The obituary printed below is from the Journal of Parkinson’s Disease, vol. 7, no. 3, pp. 409-410, 2017 and was published August 8, 2017.
Tom Isaacs was diagnosed with Parkinson’s at the young age of 26 and worked tirelessly to challenge the view that Parkinson’s was incurable, raising funds for research to trial new treatments and becoming one of the most well-known and popular international patient advocates. Having completed a successful 1,250 mile sponsored walk in 1999, Tom was determined to use his Parkinson’s to achieve more in life than he could have done without it, leaving his job as Director of a London property company to undertake his Coastin’ challenge to raise funds for Parkinson’s research. He walked 4,500 miles around the British coastline, climbed the highest mountains in England, Scotland and Wales and ran the Flora London Marathon, raising over £350,000 for Parkinson’s research. He wrote a book, Shake Well Before Use about his walk and his experiences living with Parkinson’s which he conveys with passion, optimism and humour. In 2004 he was awarded UK Charity Personality of the Year and a year later he helped to co-found The Cure Parkinson’s Trust (CPT), a patient-led charitable organisation of which he was President. The name alone challenged the view that Parkinson’s was incurable. “I still maintain that one day I will be able to insert the word ‘used to’ when I say I have Parkinson’s.” Tom said. Over ten years on and under Tom’s guidance, CPT is recognised as a key player in the world of research and has funded over $7.4 million of Parkinson’s research projects. In the early days of CPT, Tom and the charity’s Director of Research and Development Dr Richard Wyse, forged ahead with international collaborations. The first was with Patrik Brundin (of the Van Andel Institute in Grand Rapids, Michigan) who they approached about developing a research programme to re-purpose existing drugs and investigate their potential to slow, stop or reverse Parkinson’s. Dr Brundin described Tom as “a beacon of light who guided us all doing Parkinson’s research, keeping us on track.” This project became the Linked Clinical Trials (LCT) initiative, now driven by a 14-strong international Committee of neurologists and Parkinson’s researchers. LCT is in its fifth year and to date there are eight drugs within the trial programme. Once described as “the most expert patient” Tom was able to take part in scientific discussions at the highest level and his passion, charm and single-mindedness helped him earn the respect and support of such leading Parkinson’s researchers as Dr Patrik Brundin and Professors Andrew Lees, Anders Bjorkland, Roger Barker and Steven Gill. Tom worked closely and successfully with many international organisations including the Van Andel Research Institute and the Michael J Fox Foundation. He was also a Board Member of the European Parkinson’s Disease Association from 2005 until 2010. Tom was the first person with Parkinson’s to speak at the World Parkinson Congress in 2006. He has attended and presented at every WPC since and was also the patient representative on the Steering Committee and chaired the Patient Advocacy Committee for the World Parkinson Congress in 2010 and 2013. “He was a leader from the day of his diagnosis and he dreamed about helping others with PD to also become leaders to march alongside him in his journey to end Parkinson’s disease.” says Eli Pollard, Executive Director of the World Parkinson Coalition. At the 2016 World Parkinson Congress, Tom was awarded the inaugural prize for Distinguished Contribution to the Parkinson’s Community. He was also a leading contributor to the SENSE-PARK project in 2011, a European funded initiative which established more personalised, objective measuring devices for people with Parkinson’s and those who treat them. He co-founded Parkinson’s Movement, which provided a voice for people with Parkinson’s and has made progress in addressing some of the problems experienced in clinical trials – in particular, recruitment and outcome measures. In 2012 Tom was awarded the prestigious, Dr Rana International Parkinson’s Community Service Award and was also one of the torchbearers in the run up to the 2012 Olympic Games. Tom has written articles and been published in the Lancet Neurology, the Journal of Clinical Investigations and the Journal of Parkinson’s Disease for which he was on the editorial board. He was married to Lyndsey, an acupuncturist and former nurse who fully embraced Tom’s vision and was an advocate for Parkinson’s in her own right. Her phenomenal support for Tom enabled them to travel extensively to attend conferences and meetings at which Tom gave speeches and presentations about the urgent need for a cure, the power of advocacy in research and the impact of living with Parkinson’s. Tom and Lyndsey not only shared a vision but also a wonderful sense of humour, friendship and fun. Perhaps most important of all, Tom inspired people with Parkinson’s, giving hope that a cure will be found and a belief that the patient voice was being heard. He spoke openly about his condition and helped fellow patients understand they were not alone, describing hope as ‘the best medicine of all.’ As one CPT supporter said, “The PD world has lost a hero and a trailblazer.” Tom Isaacs, co-founder and President of The Cure Parkinson’s Trust was born on April 2 1968 and died on May 31st, 2017, aged 49.
As you can see from his obituary, Tom was a visionary with a unique ability to pull together the people needed to make a vision become a reality. He was one of my Everyday Hero’s and, while he will be missed, his vision to find a cure will continue on through the work of the Cure Parkinson’s Trust.
Stay tuned for my next post and we will start to catch up on what else has been happening for the last four months!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It has been over 4 months since my last post and it will take a couple of posts just to catch you up on what’s been happening this summer. But first I wish to pay tribute to Tom Isaacs, co-founder of the Cure Parkinson’s Trust in the UK, who passed away suddenly May 31st at the age of 49.
We first met Tom at the Rally to the Challenge held at the Van Andel Institute in Grand Rapids in 2014 and again in 2015. In 2016 we were present at the World Parkinson’s Congress in Portland where Tom received the award for Distinguished Contributions to the Parkinson’s Community.
Each time we came away inspired by his vision, by his energy and his sense of humor. Tom always had a smile, always had a new idea, and was always leading the way to a cure for PD. His optimism and enthusiasm were contagious and his boundless energy put the Energizer Bunny to shame. It is hard to picture a world without Tom Isaacs and his determination to find a cure for PD.
The obituary printed below is from the Journal of Parkinson’s Disease, vol. 7, no. 3, pp. 409-410, 2017 and was published August 8, 2017.
Tom Isaacs was diagnosed with Parkinson’s at the young age of 26 and worked tirelessly to challenge the view that Parkinson’s was incurable, raising funds for research to trial new treatments and becoming one of the most well-known and popular international patient advocates. Having completed a successful 1,250 mile sponsored walk in 1999, Tom was determined to use his Parkinson’s to achieve more in life than he could have done without it, leaving his job as Director of a London property company to undertake his Coastin’ challenge to raise funds for Parkinson’s research. He walked 4,500 miles around the British coastline, climbed the highest mountains in England, Scotland and Wales and ran the Flora London Marathon, raising over £350,000 for Parkinson’s research. He wrote a book, Shake Well Before Use about his walk and his experiences living with Parkinson’s which he conveys with passion, optimism and humour. In 2004 he was awarded UK Charity Personality of the Year and a year later he helped to co-found The Cure Parkinson’s Trust (CPT), a patient-led charitable organisation of which he was President. The name alone challenged the view that Parkinson’s was incurable. “I still maintain that one day I will be able to insert the word ‘used to’ when I say I have Parkinson’s.” Tom said. Over ten years on and under Tom’s guidance, CPT is recognised as a key player in the world of research and has funded over $7.4 million of Parkinson’s research projects. In the early days of CPT, Tom and the charity’s Director of Research and Development Dr Richard Wyse, forged ahead with international collaborations. The first was with Patrik Brundin (of the Van Andel Institute in Grand Rapids, Michigan) who they approached about developing a research programme to re-purpose existing drugs and investigate their potential to slow, stop or reverse Parkinson’s. Dr Brundin described Tom as “a beacon of light who guided us all doing Parkinson’s research, keeping us on track.” This project became the Linked Clinical Trials (LCT) initiative, now driven by a 14-strong international Committee of neurologists and Parkinson’s researchers. LCT is in its fifth year and to date there are eight drugs within the trial programme. Once described as “the most expert patient” Tom was able to take part in scientific discussions at the highest level and his passion, charm and single-mindedness helped him earn the respect and support of such leading Parkinson’s researchers as Dr Patrik Brundin and Professors Andrew Lees, Anders Bjorkland, Roger Barker and Steven Gill. Tom worked closely and successfully with many international organisations including the Van Andel Research Institute and the Michael J Fox Foundation. He was also a Board Member of the European Parkinson’s Disease Association from 2005 until 2010. Tom was the first person with Parkinson’s to speak at the World Parkinson Congress in 2006. He has attended and presented at every WPC since and was also the patient representative on the Steering Committee and chaired the Patient Advocacy Committee for the World Parkinson Congress in 2010 and 2013. “He was a leader from the day of his diagnosis and he dreamed about helping others with PD to also become leaders to march alongside him in his journey to end Parkinson’s disease.” says Eli Pollard, Executive Director of the World Parkinson Coalition. At the 2016 World Parkinson Congress, Tom was awarded the inaugural prize for Distinguished Contribution to the Parkinson’s Community. He was also a leading contributor to the SENSE-PARK project in 2011, a European funded initiative which established more personalised, objective measuring devices for people with Parkinson’s and those who treat them. He co-founded Parkinson’s Movement, which provided a voice for people with Parkinson’s and has made progress in addressing some of the problems experienced in clinical trials – in particular, recruitment and outcome measures. In 2012 Tom was awarded the prestigious, Dr Rana International Parkinson’s Community Service Award and was also one of the torchbearers in the run up to the 2012 Olympic Games. Tom has written articles and been published in the Lancet Neurology, the Journal of Clinical Investigations and the Journal of Parkinson’s Disease for which he was on the editorial board. He was married to Lyndsey, an acupuncturist and former nurse who fully embraced Tom’s vision and was an advocate for Parkinson’s in her own right. Her phenomenal support for Tom enabled them to travel extensively to attend conferences and meetings at which Tom gave speeches and presentations about the urgent need for a cure, the power of advocacy in research and the impact of living with Parkinson’s. Tom and Lyndsey not only shared a vision but also a wonderful sense of humour, friendship and fun. Perhaps most important of all, Tom inspired people with Parkinson’s, giving hope that a cure will be found and a belief that the patient voice was being heard. He spoke openly about his condition and helped fellow patients understand they were not alone, describing hope as ‘the best medicine of all.’ As one CPT supporter said, “The PD world has lost a hero and a trailblazer.” Tom Isaacs, co-founder and President of The Cure Parkinson’s Trust was born on April 2 1968 and died on May 31st, 2017, aged 49.
As you can see from his obituary, Tom was a visionary with a unique ability to pull together the people needed to make a vision become a reality. He was one of my Everyday Hero’s and, while he will be missed, his vision to find a cure will continue on through the work of the Cure Parkinson’s Trust.
Stay tuned for my next post and we will start to catch up on what else has been happening for the last four months!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It has been over 4 months since my last post and it will take a couple of posts just to catch you up on what’s been happening this summer. But first I wish to pay tribute to Tom Isaacs, co-founder of the Cure Parkinson’s Trust in the UK, who passed away suddenly May 31st at the age of 49.
We first met Tom at the Rally to the Challenge held at the Van Andel Institute in Grand Rapids in 2014 and again in 2015. In 2016 we were present at the World Parkinson’s Congress in Portland where Tom received the award for Distinguished Contributions to the Parkinson’s Community.
Each time we came away inspired by his vision, by his energy and his sense of humor. Tom always had a smile, always had a new idea, and was always leading the way to a cure for PD. His optimism and enthusiasm were contagious and his boundless energy put the Energizer Bunny to shame. It is hard to picture a world without Tom Isaacs and his determination to find a cure for PD.
The obituary printed below is from the Journal of Parkinson’s Disease, vol. 7, no. 3, pp. 409-410, 2017 and was published August 8, 2017.
Tom Isaacs was diagnosed with Parkinson’s at the young age of 26 and worked tirelessly to challenge the view that Parkinson’s was incurable, raising funds for research to trial new treatments and becoming one of the most well-known and popular international patient advocates. Having completed a successful 1,250 mile sponsored walk in 1999, Tom was determined to use his Parkinson’s to achieve more in life than he could have done without it, leaving his job as Director of a London property company to undertake his Coastin’ challenge to raise funds for Parkinson’s research. He walked 4,500 miles around the British coastline, climbed the highest mountains in England, Scotland and Wales and ran the Flora London Marathon, raising over £350,000 for Parkinson’s research. He wrote a book, Shake Well Before Use about his walk and his experiences living with Parkinson’s which he conveys with passion, optimism and humour. In 2004 he was awarded UK Charity Personality of the Year and a year later he helped to co-found The Cure Parkinson’s Trust (CPT), a patient-led charitable organisation of which he was President. The name alone challenged the view that Parkinson’s was incurable. “I still maintain that one day I will be able to insert the word ‘used to’ when I say I have Parkinson’s.” Tom said. Over ten years on and under Tom’s guidance, CPT is recognised as a key player in the world of research and has funded over $7.4 million of Parkinson’s research projects. In the early days of CPT, Tom and the charity’s Director of Research and Development Dr Richard Wyse, forged ahead with international collaborations. The first was with Patrik Brundin (of the Van Andel Institute in Grand Rapids, Michigan) who they approached about developing a research programme to re-purpose existing drugs and investigate their potential to slow, stop or reverse Parkinson’s. Dr Brundin described Tom as “a beacon of light who guided us all doing Parkinson’s research, keeping us on track.” This project became the Linked Clinical Trials (LCT) initiative, now driven by a 14-strong international Committee of neurologists and Parkinson’s researchers. LCT is in its fifth year and to date there are eight drugs within the trial programme. Once described as “the most expert patient” Tom was able to take part in scientific discussions at the highest level and his passion, charm and single-mindedness helped him earn the respect and support of such leading Parkinson’s researchers as Dr Patrik Brundin and Professors Andrew Lees, Anders Bjorkland, Roger Barker and Steven Gill. Tom worked closely and successfully with many international organisations including the Van Andel Research Institute and the Michael J Fox Foundation. He was also a Board Member of the European Parkinson’s Disease Association from 2005 until 2010. Tom was the first person with Parkinson’s to speak at the World Parkinson Congress in 2006. He has attended and presented at every WPC since and was also the patient representative on the Steering Committee and chaired the Patient Advocacy Committee for the World Parkinson Congress in 2010 and 2013. “He was a leader from the day of his diagnosis and he dreamed about helping others with PD to also become leaders to march alongside him in his journey to end Parkinson’s disease.” says Eli Pollard, Executive Director of the World Parkinson Coalition. At the 2016 World Parkinson Congress, Tom was awarded the inaugural prize for Distinguished Contribution to the Parkinson’s Community. He was also a leading contributor to the SENSE-PARK project in 2011, a European funded initiative which established more personalised, objective measuring devices for people with Parkinson’s and those who treat them. He co-founded Parkinson’s Movement, which provided a voice for people with Parkinson’s and has made progress in addressing some of the problems experienced in clinical trials – in particular, recruitment and outcome measures. In 2012 Tom was awarded the prestigious, Dr Rana International Parkinson’s Community Service Award and was also one of the torchbearers in the run up to the 2012 Olympic Games. Tom has written articles and been published in the Lancet Neurology, the Journal of Clinical Investigations and the Journal of Parkinson’s Disease for which he was on the editorial board. He was married to Lyndsey, an acupuncturist and former nurse who fully embraced Tom’s vision and was an advocate for Parkinson’s in her own right. Her phenomenal support for Tom enabled them to travel extensively to attend conferences and meetings at which Tom gave speeches and presentations about the urgent need for a cure, the power of advocacy in research and the impact of living with Parkinson’s. Tom and Lyndsey not only shared a vision but also a wonderful sense of humour, friendship and fun. Perhaps most important of all, Tom inspired people with Parkinson’s, giving hope that a cure will be found and a belief that the patient voice was being heard. He spoke openly about his condition and helped fellow patients understand they were not alone, describing hope as ‘the best medicine of all.’ As one CPT supporter said, “The PD world has lost a hero and a trailblazer.” Tom Isaacs, co-founder and President of The Cure Parkinson’s Trust was born on April 2 1968 and died on May 31st, 2017, aged 49.
As you can see from his obituary, Tom was a visionary with a unique ability to pull together the people needed to make a vision become a reality. He was one of my Everyday Hero’s and, while he will be missed, his vision to find a cure will continue on through the work of the Cure Parkinson’s Trust.
Stay tuned for my next post and we will start to catch up on what else has been happening for the last four months!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
