• 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

Beaching, Exercising and Blogging!

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Beaching, Exercising and Blogging!

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Tag: Clinical Trials

  • Beaching, Exercising and Blogging!

    Beaching, Exercising and Blogging!

    Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

    Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

    On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • At the Beach — Again!

    At the Beach — Again!

     

    I am writing this from the deck of a beautiful home overlooking the Atlantic Ocean on Bald Head Island, NC.  Yep, at the beach again!!  More about how we got here later in this post.

    I have looked at several more clinical trials but again find that I don’t qualify because I am already on medication.  It seems to me that communication between Movement Disorder Specialists (MDS) or Neurologists and clinical trial operators could increase trial participants.  If the Doctors were aware of the trials being conducted nearby, they could then offer their newly diagnosed patients the opportunity to particpate in the trial before they prescribed a medications.  Of course another issue is travel, most of the trials that I have tried to join are at least 200 miles away and the travel costs are usually not covered.  In her latest blog post, Soania Mathur MD states “…close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject.”  The post goes on to discuss both the logistical and the lack of knowledge issues I have discussed above.  The Michael J Fox Trial Finder website does a great job of listing all of the trials in my home radius of 300 miles and they notify me if a new one is added that meets the criteria but the newly diagnosed need to know where to look.  Perhaps one or more of the National organizations can develop a simple brochure that can be supplied to MDS and Neurologists for them to hand out or make available to patients.  It might be a start?

    I was asked this week to be a PatientsLikeMe Research Ambassador.  PatientsLikeMe is an online support group I belong to and I had applied to be a member of a research advisory committee they were forming.  While I wasn’t selected for the advisory group I was asked to be a Research Ambassador. Per the email ..”Like the Team of Advisors, our Research Ambassadors are being asked to commit to a program that’s designed to put you in the driver’s seat of making research better.”  As an Ambassador, I will get special communications each month for the rest of the year about new research initiatives, information about data being collected and how it will be used, and use my blog and other social avenues to share this information with the Parkinson’s community.  I have participated in a couple of their research projects already, including the one where I did the voice test over the phone to see if they can track the progress of my Parkinson’s. Sounds interesting and I am looking forward to participating.

     

    We had a great visit with my daughter Holly and grandchildren Charlie and Kayla.  The weather was great until the last evening so we got in a lot of boating, tubing, swimming, fishing and stand up paddle boarding along with side trips to the Ripley’s Believe It or Not museum and a couple of rounds of mini golf.

    Kayla turned out to be the fisherperson extraordinaire hooking a couple of nice catfish and a bunch of sunfish from the dock.  Charlie loved being on the water and riding the tube. Holly and Kayla both enjoyed stand up paddle boarding so much the first time, they went back for more before leaving for home.  It was a great visit and a good time was had by all.

    We are enjoying our time at the beach in Bald Head Island.  The island is reachable by ferry from Southport, NC and once you are here, you travel by foot, bike or golf cart.  We have been lucky to spend a week here for the past several summers with my stepson David and his wife Shelly and the two grand kids Breanna and Garrett.  This year Breanna is in MN so this is the first time we have been here without her.  Garrett always brings along a friend or two, this year he brought along 4 high school buddies and they are having a blast.  Dave and Shelly’s friends Mario and Missy have also joined us for the week.  It is a great place to just relax, read books, take long walks on the beach and watch the World Cup.  I am trying to catch up with all of the magazines I haven’t read since we returned from Florida in early March and produce this blog post.  Looks like the blog post will make it, we’ll see about the magazines.

    Our friends Mary Ann and Don live nearby in Wilmington, NC so they came over for a day and we had a great time, we hadn’t seen them for almost 2 years so we had a lot of catching up to do.  We enjoyed a nice lunch with them and a couple of ‘slow’ rides around the island as one of our golf carts is not super speedy. 🙂

    Next up is a visit from my son Ryan and his wife Sarah and grandson Julian and his half brother Trysten for the Fourth of July, look for more fun on the lake in the next post.