Can you believe it is already Thanksgiving Weekend and the start of the holiday season! Time really flies when you are having fun. Or maybe it really flies when you are exercising like crazy? For sure it flies by when you are having fun exercising! We discovered we really enjoy tennis and have been down to the courts at our complex a couple of times in addition to the classes which we hope to continue in the coming months. It seems that exercising for an hour before the Pedaling for Parkinson’s class is having an impact on my cycling, so think I will try skipping that class for a bit to see if that is the issue or not
A quick reminder that following Black Friday and Cyber Monday is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause. Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities. It is a great opportunity to make a difference.
In the spirit of Thanksgiving I want to say a big THANK YOU to my wonderful wife and care partner, Mara, and to my family and friends and to all of you who take the time to read my posts and follow my journey with PD. Thank you all and Happy Holidays!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training. Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.
The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.
So now the question – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after. So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.
In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!
Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.
While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD. To learn more about the trial, click here or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.
Well, off to exercise!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Mara and I attended the World Parkinson’s Congress (WPC) in Portland, OR in September and it was a phenomenal experience. The WPC is a meeting held every three years that brings together PwP’s, Caregivers, Researchers and members of the medical community to discuss what’s happening in PD research and care. This year’s meeting was the biggest so far with over 4,400 attendees from all over the world. The presentations ranged from highly technical research results to what is the best exercises for PD and what’s on the horizon.
Many of my fellow PD bloggers were in Portland and I have read many excellent posts about their experiences at the WPC which I have linked to at the bottom of this post. I met a few authors of blogs I follow and saw several others but didn’t get a chance to meet face to face as I performed my volunteer duties.
Rather than duplicate the information contained in the many excellent posts by my fellow PD bloggers, I thought I would write about the WPC from a volunteer’s perspective. As you can imagine, a conference with over 4,400 attendees from all over the world takes a lot of work and coordination. The volunteer coordinator was Matthew DePace and he had his hands full making sure all of the presentations were covered, greeters were stationed around to answer questions and guide attendees and be the point person for any problems we might have with microphones, projectors etc. He not only managed to pull it all off, he provided snacks in the volunteer room to keep us going!
I was assigned as a greeter/room monitor for one of the presentation rooms, so I was able to see and hear some of the presentations in that room each afternoon when I wasn’t scanning in the attendees and handing out hall passes (OK maybe I didn’t have to hand out hall passes). Mara mostly worked in the registration area directing attendees to the right locations, helping them find the presentation room they needed, handing out convention goodie bags and programs and answering all kinds of questions.
Being a volunteer was hectic and exhausting but it was also exciting and rewarding. We met PwP’s of all ages from all over the world and had the opportunity to talk about differences in care, diagnoses, etc. We saw many old friends from the Grand Challenge meetings in Grand Rapids and other meetings we have attended. And we made new friends as we expanded our international support group.
Even though we were busy, we did attend several sessions including ones on stem cell research and exercise. One of the highlights for us was being present when Tom Issacs of the Cure Parkinson’s Trust in the UK received the WPC award for Distinguished Contributions to the Parkinson’s Community. I have written about Tom before (here and here) and this award was well deserved. Tom’s acceptance speech was a mixture of gratitude, humor and hope.
The closing ceremony was an emotional end to a great 4 days and included this quote from Dr. A. Jon Stoessl, President-elect of the WPC who said, “In the clinic, we focus on what you can’t do but at WPC 2016 we see all the things you can do.”. This is the plus of bringing together PwP’s, care partners, members of the PD medical community and researchers in one place. We found this to be true in the Grand Challenge events and it was exciting to see it work on such a large scale.
After yet another phenomenal performance by Tom Issacs who sung a song to the tune of Climb Every Mountain (watch the unplugged version here) the conference ended with a drum ceremony that involved the entire audience.
As promised here are several links to blog posts from other bloggers that attended the WPC. By no means are these the only links, there are many posts, tweets (#WPC2016), and web pages with great information from the WPC, so fire up your favorite search engine to find more!
Again this is not a complete list but should give you a pretty good feeling for the World Parkinson’s Congress 2016!
We are back in Sarasota and I have started Pedaling for PD and the PD in Motion classes so my exercise time is ramping back up after a few weeks (or months) of being a bit lazy. It’s amazing how quickly you are able to get going again and even more amazing how much better I feel. More about the Sarasota Experiment Part Two in the next post.
“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
