• 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

     

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.