I realize that I should have included these photos with the last post about our activities for the last two months. Hover over the picture for captions.
So there you have it, in two posts we are up to last weeks World Parkinson’s Congress meeting in Portland, OR. Those adventures will be up next!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It has been 2 months since my last post (good thing I didn’t promise to post more this year!)and it wouldn’t surprise me to find out no one is following this blog anymore. it has been a busy two months and as you will see below, I am probably 3 or 4 posts behind. So today’s post is a short one to let you know I’m still kicking and will catch up soon.
Wondering what’s been going on since July 24th? Here is the short version in chronological order:
Whew! No wonder I’m tired!!! So as you can see, a lot has been going on and I owe you a few posts with some details which I will start working on forthwith. It may take a few weeks to get it all published but I’m going to try and get it done in shortly after we return to Sarasota next week.
More to come.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Three years ago today I received the official diagnoses – “You have Parkinson’s Disease.”. And so began my journey as a PwP which included starting this blog a couple of weeks later.
A lot has happened in the last three years including the visit to Kripalu, going to the University of Florida Movement Disorder Clinic for a second opinion, attending Partner’s in PD meetings in Atlanta and Ft Lauderdale, going to the Grand Challenge in Parkinson’s conferences in Grand Rapids in 2014 and 2015, and switching to the Vanderbilt Movement Disorder Clinic for my PD care. And then there is the ongoing Sarasota experiment this year!
If you look back through the 3 years of posts, you will notice that I was much more of a blogger early on with 12 posts in 2013, 25 posts in 2014, slowing to 19 in 2015 and all but stopping with 6 in the first seven months of this year. I’d like to say things will improve but as I have added responsibility for a several PD related websites I don’t think it will improve much. In addition to this blog, I also maintain the PK Hope is Alive support group website, our local Kingston support group site and we have developed the Tennessee Parkinson’s Disease Resource site in an attempt to gather as many of the resources as we can in one place. We hope that this site benefits the entire PD community in Tennessee.
Enough excuses, it has been a positive three years so let’s talk about the pluses!
One plus of traveling to the various conferences and other meetings is I have met so many inspiring PwP’s who have lived with PD longer than I but are staying active and not letting PD define them. Seeing them and keeping up on ongoing research in PD gives us hope that a way to slow the progression or even a cure is possible in the next 5 – 10 years.
The change in medication to Levadopa/Carbidopa has produced a marked reduction in my symptoms which allowed me to up my exercise routine which has also reduced the symptoms and improved my overall health.
Our Sarasota experiment is progressing well, I have been doing Pedaling for Parkinson’s while there and using the on-site fitness center to keep up the exercise routine plus the robust PD community there includes PD in Motion dance classes, boxing classes and yoga classes and we are hoping for another “Let Your Yoga Dance” with Megha this winter.
As for the future:
We will return to Sarasota around the first of September for a bit before we go to Portland for the World Parkinson’s Congress. We are really looking forward to this meeting which brings together PwP’s, care partners, and researchers from all over the world to discuss the status and the future of PD. We hope to renew old friendships and make new ones during the four day conference.
We will continue to participate in clinical trials and serve as Fox Trial Finder Ambassadors and I will continue to blog, hopefully more regularly than I have been.
And finally I want to say thank you to the best care partner ever, my wife Mara and to family and friends who have provided tremendous support on my journey with PD.
Thank You All!
“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 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 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!