• Happy Holiday Season!

    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

     

     

  • Suddenly We Are Gym Rats!

     
     
     

    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

     

     

  • The WPC Experience, a Volunteer Perspective

    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!

     
     
    from Sheryl Jedlinski (Living Well with Parkinson’s Disease)

     

     

    Arriving At the World Parkinson’s Congress and Perky’s Interview with Brian Grant from Allison Smith (The Perky Parkie)

    Notes from the World Parkinson’s Congress from Kirk Hall (Shaky Paws Grandpa)

    World Parkinson’s Congress 2016 from Karl Robb (A Soft Voice in a Noisy World)

    5 Inspirational moments from the World Parkinson’s Congress 2016 from Parkinson’s Life

    WPC Highlights – Eli Pollard and The World Parkinson’s Congress 2016 from The Cure Parkinson’s Trust

    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

The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
 
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
 
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
 
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
 
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
 
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
 
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
 
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius

The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
 
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
 
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
 
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
 
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
 
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
 
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
 
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius

Year: 2015

  • The Busy Month of May

    The Busy Month of May

    Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
     
    First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
     
    The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
     
    It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
     
    We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
     
    We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
     
    Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
     
    And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • It’s Clinical Trial Awareness Week

    Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met.  Amazing how life changes isn’t it?

    Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder.  But then what?  You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure!  But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug.  Oh and that is the same problem with your second choice too!

    Oh look, a soap box….

    I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants.  Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug.  Presto, no longer eligible for many trials, at least while in the early progression of PD.

    I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs.  But, what if the combination produces a better result?  Already many of us take two or more drugs  to treat all of our symptoms and improve our quality of life.  So here’s my idea..

    Why not include some already medicated volunteers in the study design?  For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex?  It might require some tweaking of the dosage of the drugs but you have another 100 participants  in your trial.  Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

     …..OK, off the soapbox.

     
    Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
     
    As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
     “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

     
     
  • Walking for Parkinson’s Research

    Walking for Parkinson’s Research

    Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN.  The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!

    We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.

    We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.

     
    This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.
     
    Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist.  I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .
     
    I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius