• Stay Injury Free While Combating Parkinson’s Disease

    I just posted this on our East Tennessee Support Group website and thought I would also post it here. This excellent article is from the PD Gladiators™ website and is posted here with their permission. PD Gladiators™ is a nonprofit organization devoted to combating Parkinson’s disease with vigorous exercise. They are based in Atlanta and provide over 40 weekly exercise classes for PD patients in the Atlanta area. For more information, please visit their website by clicking here.

    Stay Injury Free While Combating Parkinson’s Disease

    Maggie-Coslett

    Posting for Dr. Hackney this month is Maggie Coslett a doctoral candidate at Emory University School of Medicine’s DPT program. She is also working on a Dance Medicine Directed Study Internship, evaluating and providing appropriate therapeutic interventions for a variety of dance-specific injuries and conditions . Maggie has assisted with treatment sessions for Atlanta Ballet dancers and other pre-professional dancers.

    Madeleine E. Hackney, PhD The Exercise Files blog

    We all are now well aware of the research that highlights the benefits of exercise for Parkinson’s disease (PD). Many neurologists now are saying that exercise could even be considered as a type of medication for PD, and it should be taken regularly.1 Exercise has been shown to help slow the progression of Parkinson’s, prevent falls, improve balance and strength, result in better posture, and even assist your brain’s cognitive function.1 With all of these positive gains, who wouldn’t want to exercise? With so many great options out there now for PD individuals including boxing, tai chi, yoga, dance, Zumba, and movement classes that specifically target PD-specific concerns, there is no question that many of you will begin exercising for the first time in years. However when beginning a new exercise program, there is always the risk of becoming injured.

    Having been a dancer for ten years, one of the most important lessons I learned was knowing how to listen to my own body. I knew when a particular movement did not feel right, and I knew when to not ignore the pain and get my body checked out. Now that I am fortunate enough to be working with the physical therapists who treat the Atlanta Ballet dancers through a directed study internship, I have noticed that the same mentality holds true with these dancers. We consistently see dancers that come in due to something not ‘feeling right’ during class or rehearsal, and they want to get it checked out sooner rather than later to prevent injury. They are dedicated and motivated to continue dancing, and they understand that sometimes this means that they have to take a break to allow their body to rest. This trend is true for all of the dancers we treat, from the professional dancers all the way down to the 10 year olds. They have this devotion and perseverance instilled in them to follow the necessary recovery steps in order to pursue their passion of dancing.

    In order for all of you to continue to exercise long-term, I have compiled a few tips that I have learned along the way to help ensure that you can combat Parkinson’s while staying injury free!

    Listen to your body!

    No Pain No Gain

    One of the biggest causes of overuse injuries is not realizing when to listen to your body and stop exercising. Forget the old saying “no pain, no gain” and begin noticing if you are experiencing any type of pain that lasts more than a few days. You are expected to feel some soreness and pain after a hard workout or if you engage in a new type of exercise, as the muscles are beginning their break-down and repair process in order to grow stronger. However, if this pain lasts more than 72 hours, it is likely that you may have suffered an injury. If you attempt to “work through” the pain hoping it will ease off, it will most likely continue to get worse. Our muscles require some amount of time to be able to adjust and adapt to a new program, and if they do not receive enough of the necessary rest, they can fatigue and your body begins to compensate, leading to injury.

    If you are taking one of the classes offered through PD Gladiators, you can always notify your instructor who will help guide you in the right direction. But if you are beginning a new workout session independently, I would highly recommend getting a trainer for the first month in order to have someone there to help you recognize what is “good” pain and what is “bad” pain. Sometimes you just need a little bit more rest in between exercise sessions to allow your body to recover, so listen to YOUR body and take some time off so that next time you can push it even harder at that exercise class!

    Warm-up and Cool-down

    Group exercise guys

    Most exercise programs incorporate warm-ups and cool-downs into their sessions, but if you start to realize that there is not enough for your specific needs, you can begin coming to class a little early in order to get your body primed for exercise! It has been proven that warm-up prior to physical activity significantly reduces the likelihood of an injury occurring.3 A proper warm-up allows your body temperature to increase, facilitates the blood flow to the muscles, steadily increases your heart rate, and this gives oxygen the opportunity to be sent out to the body more efficiently.3 A proper warm-up should also include dynamic stretching rather than static stretching. Dynamic stretching is a type of stretching that involves movement and is a very quick stretch to the muscle. This can include walking back and forth while drawing your knee to your chest, swinging your leg out in front and back, performing lunges, or arm circles.

    Static stretching is the type of prolonged stretch that most of us think of with the word ‘stretch’. However this type of stretch is more beneficial to be performed after exercise during the cool-down. Static stretching allows the muscles to relax and helps re-align the muscle fibers to assist in preventing injury. This is any type of stretch where you hold the position for 10 seconds or longer. Skipping the cool-down will also result in waste products such as lactic acid to build up in the muscle and can cause additional muscle soreness later on.3

    Exercise at YOUR Level

    Every person is different and unique, and everyone who partakes in fitness classes is on a particular level. I know it is difficult to try and not compare yourself to other individuals in the class, but just know that everyone began from square one at some point, and you need to start off slow in the beginning. By individualizing your exercise session and listening to your body, you will help prevent injuries from occurring and you can exercise for a long time in the future!

    Get Plenty of Rest

    Enough sleep is necessary in order to help your body to repair itself. Every individual needs between 7 and 9 hours each night in order for your body to release its natural hormones and keep you energized and ready for that next exercise session.

    Eat Healthy and Hydrate

    Make sure you drink enough water during exercise to help prevent unnecessary fatigue and muscle cramps. Proper nutrition can also help keep your mind alert and your body feeling great so you can take it to the next level.

    Cross-Training

    Repeating the same motions and movement patterns over and over again can lead to overuse injuries. By choosing other various activities and exercise classes, you can give your muscles a break and allow them to recover. Try combining dance or zumba classes with boxing classes to get a combination of upper and lower body strengthening!

    Get Regular Physicals

    Going to see your primary care provider regularly can help make sure you do not have any other health issues or overuse injuries occurring. Your doctor can make sure that everything looks great, and in the chance that there might be an injury or there are risk factors present, your doctor can then possibly make the decision to refer you to another healthcare profession such as physical therapy.

    References:
    1. Cianci, H. (2012). Parkinson’s disease: fitness counts. National Parkinson Foundation.
    2. Exercise: Injury Prevention and Self-Care. (2014, March). Retrieved February 24, 2016. http://www.uhs.berkeley.edu/home/healthtopics/exerciseselfcare.shtml
    3. Woods, K., Bishop, P., & Jones, E. (2007). Warm-up and stretching in the prevention of muscular injury. Sports Medicine, 37(12), 1089-1099.

    Dr. Madeleine E. Hackney, Ph.D, is a Research Health Scientist at the Atlanta VA Center for Visual and Neurocognitive Rehabilitation and an Assistant professor of Medicine in the division of General Medicine and Geriatrics at the Emory School of Medicine. She holds a Ph.D. in Movement Science from Washington University and a BFA in Dance from NYU, Tisch School of the Arts and has also been an American Council on Exercise certified personal trainer since 2000. Dr. Hackney’s extensive research interests include inquiry into challenging exercise programs–traditional exercise, Tai Chi and partnered tango classes–designed to improve physical function and quality of life in people with PD, older adults and those with serious mental illness. In 2014, she co-founded MDT Education Solutions, which has trained dozens of fitness and allied health professionals how to develop and lead safe, evidence-based exercise programs for people with PD at all stages of the disease, including almost all instructors in the PD Gladiators Metro Atlanta Fitness Network (including the YMCA of Metro Atlanta).

  • 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

     

  • 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

     

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

 


The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

 

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

 

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

 


The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

 

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

 

Tag: Clinical Trials

  • What I Did During My Summer Vacation (so far)!

    What I Did During My Summer Vacation (so far)!

    It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

    As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

     


    The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

    After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
    with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

    Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

    Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

    And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

    Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

    And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

     

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

     

  • Parkinson’s Awareness Month 2015

    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
  • 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