We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.

April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease. His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today. And then he says this about awareness:

“Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.

Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”

I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other. So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:

“… if we can ease the burden, maybe we can make the road to a cure easier to walk.”

You can read Corey’s entire post here at his blog The Crooked Path .

On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park. The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations. Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge. More information about the local event can be found here. If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.

We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post. In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.

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

Dancing and Singing at the Beach!

It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach. As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc. Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation. If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.

A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet. This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide. As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso. We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.

And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation. Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP. It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.

We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym. In fact her story was featured in the February 2015 edition of Sarasota Magazine. Merrily is an outstanding example of how exercise can help fight PD. Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.

We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater. Good Times, Good Times!

Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit. Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis. At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to link to the mPower app information. It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a report of the results to take along on Doctor visits.

Until next time..oh wait I forgot to remind you to sign up for Fox Trial Finder and now Fox Insight!

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

Partners in Parkinson’s – The Sequel

This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:

The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.

The afternoon sessions included the breakout sessions:

Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.

Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

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

We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
the beach.

We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.

We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

“I’m always preaching about how the studies prove that exercise is the
only proven way to slow the progression of PD. If you are told there’s
this miracle fix that can ensure your body works the way it does (or
maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well,
it’s no secret, you just have to get up and move the more the better.
If you say you “can’t” run anymore “try” walking. If you say you
“can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your
feet “try” biking. Your balance is bad and you say you “can’t” because
you’ll fall, then try a stationary bike with a good seat, or chair
yoga!” (Read the entire post here)

So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.

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

Tag: Travel

Our Sarasota Experiment – Part One

We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
the beach.

We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.

We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

“I’m always preaching about how the studies prove that exercise is the
only proven way to slow the progression of PD. If you are told there’s
this miracle fix that can ensure your body works the way it does (or
maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well,
it’s no secret, you just have to get up and move the more the better.
If you say you “can’t” run anymore “try” walking. If you say you
“can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your
feet “try” biking. Your balance is bad and you say you “can’t” because
you’ll fall, then try a stationary bike with a good seat, or chair
yoga!” (Read the entire post here)

So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.

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

May 19, 2016
Pedaling with Parkinson’s

As part of our stay here in Florida, we became temporary members at a local Gym that provides PwP specific classes along with all the other amenities of a large gym. One of the classes they offer is Pedaling with Parkinson’s, a twice a week spin class specificly designed for PwP’s. The objective of the session is to cycle for 40 minutes, keeping your heart rate between 60% – 80% of your MHR (maximum heart rate), and keeping the cadence (RPM) between 80 and 90 RPM per minute.

In order to take the class, I had an hour long evaluation that covered, among many things, medical conditions other than PD, what PD symptoms I had, and how my balance was – almost made the 30 seconds standing on one foot! Then, after taking my resting heart rate and blood pressure, I spent 20 minutes on the spin bike, upping the resistance until I couldn’t maintain 80 RPM for a minute, which provided my MHR.

I managed to pass the tests so last Friday I joined a full class of 20+ PwP’s for my first forced march on a bike! After adjusting the bike, putting on the heart rate monitor and doing a light warm up spin (you know in the 60 – 80 RPM range) the instructor cranked up the music and off we went, upping the resistance while maintaining the cadence at 80 – 90 RPM for what seemed to be forever. OK maybe it wasn’t forever but it was a solid 40 minute workout, with brief slow downs for hydration before the next song came on. All of our data was captured on a computer which then projected our heart rate and the percent of MHR up on a screen in front of the room. In addition, the bike was equipped with a device showing our RPM, heart rate and % of MHR.

This program is based on research by Jay Alberts, PhD, at the Cleveland Clinic and a demonstration study by the Neuro Challenge Foundation here in Sarasota which have yielded promising preliminary scientific and anecdotal results. The studies have indicated that doing this twice a week helps create new pathways (neuroplasticity) in the brain and participants have reported a reduction in tremors, better balance and gait, regained sense of smell, and increased energy. I have been interested in doing this for some time and I’m glad I get the opportunity to participate while here as they also offer this class at the YMCA in Knoxville if I want to continue when I get home.

The Neuro Challenge Foundation also sponsors the three dance for PD classes we are attending while here along with many other activities for PwP and Care Partners. They provide a Parkinson Disease Resource Guide and offer a one on one Care Advisor Program to help PD Patients find the best treatment and support options available. An excellent resource for PwP in the Sarasota area and one of the reasons we like to come to this area. Speaking of dance classes, our Let Your Yoga Dance for PD class made the local paper, you can view the article here. We have a good time in all three classes and it certainly helps keep me flexible.

Oh, did I mention we caught up with Dale, Monica and grand daughters Angelina and Ariana in San Francisco? OK, maybe we were at Disney World’s Hollywood Studios and took advantage of the set. We had a great time with them in Disney World and here at the beach.

We continue to enjoy our beach time in between dance classes and time at the gym and I can’t believe our time here is half over already!

Don’t forget to sign up for MJF Trial Finder by clicking on that large orange button on the top right and then you might as well join Fox Insight by clicking on the logo to your right! Thanks.

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

February 21, 2016
It’s a New Year…

and it’s way past time for a catch up blog post. I think the last post of substance was about Giving Tuesday at the end of November, 2015! So this is my attempt to condense a couple of months of activity into one post. Not long after the Giving Tuesday post, we made an unscheduled trip to Traverse City, MI to help out Mara’s sister with her used book store. We have no retail experience and it’s been over ten years since I’ve worked a 40+ hour shift but we had a great time taking care of business. If you are in the Traverse City area, be sure and stop in at her store The Bookie Joint downtown just off Front Street. (yep, a shameless plug!)

We got home just in time to get ready for Christmas and enjoyed the holidays with our family and then it was time to start getting ready for THE BEACH! We arrived last Saturday and were awakened at 3am Sunday morning by the sounds of a tornado (I’ll be darned if it didn’t sound just like a train). Luckily no one in our complex was injured but a lot of the units had windows and screens damaged and a lot of cars suffered broken glass and other damage. We hadn’t planned on being part of the effort to prove the theory of global warning but we are thankful that no one was hurt and our unit and car were not damaged.

On the Parkinson’s front, I was appointed webmaster for the East Tennessee Parkinson’s Support Group and spent a lot of free time during December learning WordPress and upgrading the site to the latest version. When that wrapped up early in January I spent my free time updating the Tennessee Parkinson’s Disease Resource site with maps and adding new information.

Somehow I also managed to take an exercise holiday and I began to notice my symptoms were getting worse, particularly the brady kinesia (ridgity). Since we arrived in Florida, I have been walking at least an hour a day and we have signed up for two Parkinson’s dance classes We are also planning to sign up for additional exercise classes at the Neuro Challenge Institute, a great resource for Parkinson’s Patients in the greater Sarasota area. I am already noticing improvement which once again proves how important exercise is for PWP’s!

We also signed up for a weekly Let Your Yoga Dance class. We were introduced to Let Your Yoga Dance while at the Kripalu retreat in October 2013 and this class reunited us with instructor/founder Megha and Joel and Melissa whom we first met at the retreat and meet up with every year while in Sarasota. Our first class was yesterday and Megha had us doing deep breathing exercises, stretching and dancing in no time. It is a great class that not only provides exercise but brings ‘healing through joy’.

Coming up we will attend the Neuro Challenge Insitute annual Parkinson’s Symposium on Saturday where one of the topics to be covered is the Tasigna trial conducted at Georgetown University. Tasigna is a leukemia drug that appears to stop or reverse some of the PD symptoms during a small test involving 12 Parkinson’s patients. I am looking forward to hearing more about the first trial and the results and will provide more information in the next post.

So there you have it, a short version of a very busy couple of months. Oh, did I mention I am still wearing my smartwatch and providing data for the Fox Insight Trial? If you haven’t signed up you can do it here, and don’t forget to also sign up for Fox Trial Finder at the same time and join over 52,000 of us who have already signed up!

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

January 20, 2016

Parkinson’s Awareness Month 2015

Dancing and Singing at the Beach!

Partners in Parkinson’s – The Sequel

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Tag: Travel

Our Sarasota Experiment – Part One

Pedaling with Parkinson’s

It’s a New Year…