Tuesday, August 15, 2017

The Sarasota Experiment Results Are In!

As I noted in the previous post, it had been over four months since I posted anything at all and a busy four months they were.  In April we decided the Sarasota experiment was a success and that we should sell our Tennessee home and move to Sarasota full time.  In Sarasota I am able to pedal for Parkinson's twice a week, play tennis two to three times a week, attend a Dance for PD class once a week along with yoga, tai chi and general exercise classes.  And I don't have to travel 45 minutes to attend any class, everything is within a 10 - 15 minute drive which makes it easy to 'get up and go' exercise. So I have updated the cover photo to a great beach sunset with two dolphins enjoying the view and made some modifications to my profile over there on the right.

More and more studies are showing that exercise is one of the keys to living with PD (or just living in general).  While it seems like I am taking on more that I should, I find instead that the more I take on, the better I am able to deal with my PD symptoms.  This has certainly proved out during the 3 months we have been in Tennessee, my exercise routine dropped to almost nothing and I can tell my symptoms are worse.  

So we finished April in Sarasota with a visit from our friends Tom and Marilyn.  We enjoyed sunsets on the beach, nice walks in the complex where we live, touring the Ringling estate and Selby Gardens and kayaking through the mangrove tunnels near Lido Key.  

In early May we returned to Tennessee and started the process of getting the house and grounds ready to sell.  We also had a visit from my brother-in-law Mike and my sister Marcia and we took a trip to the Grand Ole Opry in Nashville, a bear sighting trip through Cades Cove in the Smokies (yep we saw some bears) and a lot of fishing!

In June we worked on the home and squeezed in a trip to Bald Head Island with Dave and Shelley and Breanna and Garrett.  By the middle of June we were ready to put the house on the market and we listed it on a Friday and sold it on Monday, just before the first of the summer visitors arrived! At the end of the month, Dale Monica and Angelina and Ariana arrived to celebrate the fourth of July, a birthday or two and the sale of our house.  And on July 4th Ryan Sarah Julian and Trysten arrived to  celebrate the holiday and spend some time on the lake.   After the first round of visitors left, Holly, Paul, Charlie and Kayla arrived for a visit at the end of July and we enjoyed the lake and took a trip up to Gatlinburg for lunch and mini golf.  

We had a great time with everyone and are glad everybody got a final visit to the Lake Cottage. At the end of the month Mara and I went to Townsend to celebrate our 27th wedding anniversary and my 71st birthday.  It was a great 3 days of R and R after a hectic couple of months getting ready for the house sale and visitors.

Since the Townsend trip we have been packing and deciding what to sell and what to keep.  This weekend we will hold an estate sale and the house will be empty.  We will stay until the 22nd since we are on the direct path for the full eclipse on the 21st.  Then we will make a quick trip to West Virginia to visit granddaughter Breanna before returning to Sarasota by the 1st of September.

July 24th marked the 4 years since being diagnosed with PD and I do believe that I was doing better while maintaining my Sarasota exercise routine and I am looking forward to gearing back up to see if I notice a difference.  I visited my PD doctor last week and he was pleased with my overall condition and he recommended no change in medication levels, just continue to exercise.

August 6th also marked 4 years publishing this blog and, once again I could make my usual promise that I will do better and post more. But since all that does is set high expectations for you and feelings of impending doom for me, I'm going with no promise this year.  After all It Is What It Is!

Speaking of exercise, last week the NPR show The Peoples Pharmacy aired a show about Pedaling for Parkinson's and the advantages of exercise in general.  The show includes an interview with Kathy Helmuth, who is the instructor of our Pedaling class in Sarasota along with interviews with Dr. Jay Alberts who discovered the benefits of "forced exercise" for PD patients and Dr.Jordan Metzel who discusses the benefits of exercise for us all.  You can download or listen to the podcast here

So that is a condensed version of pretty much all that has been happening for the last four months.  Next time I will be posting from Sarasota and, hopefully, talking about changes we have seen since getting back into a regular exercise routine.  Until then, thanks for reading and for sticking around during my 4 month hiatus. 

"It does not matter how slowly you go as long as you do not stop." - Confucius


Sunday, August 13, 2017

Catching Up

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