• 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

     

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Year: 2015

  • Catching Up

    We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

    To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

    In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

    A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

    When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

    We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

    In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

    So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • Rallying to the Challenge – 2015

    Rallying to the Challenge – 2015

    We recently attended our second Grand Challenges in Parkinson’s research conference hosted by the Van Andel Research Institute in Grand Rapids, MI.  Again this year The Cure Parkinson’s Trust (UK) and Parkinson’s Movement(UK) sponsored the Rallying to the Challenge meeting which is conducted in conjunction with the research conference and provides an opportunity for researchers, patients and caregivers to exchange information. The theme for this year’s Rally was “Outcomes and Measures, a new look at Measuring Parkinson’s” and, as you will see, we had a very full two day agenda.

    Tom Isaacs, co-founder of the Cure Parkinson’s Trust, opened our portion of the meeting saying that together we are making a seismic shift for better research, research that includes the patient and the patient’s needs.  As a result of last years Rally a ‘Clinical Trials Charter’ (click here to view the charter) was developed as a cooperative effort by patients and researchers.  A UK multi-center clinical trial has adopted the charter for their research which will provide a real-world test and a stepping stone to wider adoption.  We were amazed to see how our efforts from just a year ago have paid off in the cooperative development of this charter by patients and researchers. (Read the post from last year here)

    Tom then discussed this year’s Challenge – How do we improve outcomes and measures in clinical trials?  The emphasis again this year was on improving the patient experience and introducing patient centered change to the research process.  In addition we will discuss how data gathered from new technology, (wearable sensors, smartphone apps, etc) can provide new measures and improve some of the current measures.

    Jon Palfreman, PwP and author of the recently released “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease” pointed out that the Unified Parkinson’s Disease Rating Scale (UPDRS) is primarily subjective and provides only a snapshot of the symptoms you are having when administered, usually 1 or 2 times a year during your Dr. visit.  Ideally, with the advent of wearable sensors and other technology, you should be able to provide a picture of your symptoms for the entire period between Dr. visits and get real time feedback yourself.

    Dr. Soania Mathur and Dr. Jon Stamford reviewed the results of this year’s survey about the symptoms of PD which have the most important impact  quality of life. Interestingly, out of 492 responses to the survey not one respondent listed their top five symptoms in the same order. In fact, if you look at this slide from the final presentation, I count 28 symptoms that were brought up when answering the question “What symptoms most affect your quality of life?” This slide certainly points out that PD is truly different for each of us.

    The top symptoms in both categories were put into smaller groupings and we broke out into focus groups to discuss how to improve measurement of our set of symptoms. Every focus group not only developed ideas for measuring symptoms, but also came up with tips and tricks for dealing with the issue, for example walking backwards to relax dystonia of the foot.

    The next morning, we had an almost overwhelming number of presentations about new technological devices that will help measure PD symptoms when on or off medication.  Presenter’s included Ken Kubota from Michael J Fox Foundation (Fox Insight Wearable Trial), Anupam Pathak Ph.D. from Google (the Lyft spoon), Bruce Hellman (uMotif Smartphone app now available in the UK and coming soon to the US and Canada) and Caroline Tanner (mPower also a smartphone app developed from the SmartPhone PD clinical test I participated in)

    We also had presentations from a Davis Phinney Foundation representative about a social networking program they are developing, one from Peter Schmidt of NPF about their Parkinson’s Outcome Project (another one I am participating in) and from Eli Pollard executive director of World Parkinson’s Coalition  about PowerThroughParkinson’s, a program they are bringing out with the Brian Grant Foundation that encourages PwP to commit to exercise and eat right.

    Day Two also included a presentation from the renowned Parkinson’s Doctor and researcher Bas Bloem from the Netherlands about Parkinson’sNet, a program he helped develop in the Netherlands 10 years ago and which has been implemented in LA area and soon in Grand Rapids.  ParkinsonNet has one goal: to guarantee the best possible care
    for people suffering from Parkinson’s Disease.The program has been extremely successful in providing expert care while also reducing costs.

    We then reconvened with the researchers and Tom Isaacs and other members of Parkinson’s Movement made a presentation of the results of our meeting and the need for patient involvement in the development of measures that would be the:

    • Right Measure – developed with the end user as a partner
    • Right Person – measure what is important to the person
    • Right Situation – don’t forgot off periods and how PD changes

    In addition to meeting old friends and making new ones, we also enjoyed the exhibition of photos by Norwegian Photographer Andres Leines entitled “This is Parkinson’s”.  Andres has early onset PD and has been taking pictures of other EOPD patients to point out that Parkinson’s is not just tremors and doesn’t just effect seniors. You can view some of the photos in this excellent YouTube video.

    And finally, the Michael J Fox Foundation just announced that the Fox Clinical Trial Program has exceeded 50,000 registered volunteers!  In case you’re not one of us, click on the big shiny button at the top of this page and sign up!  Thanks.

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

     

  • Links and More Links

    No not sausage links, website links! I thought I would devote this post to what’s going on in the Parkinson’s world.  As you know I follow a number of other Parkinson’s blogs and here are a few items of interest from month or so, click on the link to read the entire post (will open in a new tab).

    Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s.  Inosine is a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression. The trial will start early next year in 60 sites.

    Parkinson’s Psychosis Drug One Step Closer to FDA Approval Acadia Pharmaceuticals announced  that it has submitted a New Drug Application to the FDA seeking approval for its drug Nuplazid (the compound pimavanserin) for the treatment of psychosis associated with Parkinson’s disease (PD).  Current drugs used to treat PD psychosis have safety concerns and serious side effects for PD patients.  A Phase III study showed the drug significantly reduced psychosis compared to placebo without worsening motor function. The study also showed the drug was safe and well tolerated.

    How to Find the Right Dr   Some excellent suggestions from the Parkinson’s Community on linking up with the right Doctor for PD treatment.  My recommendation –  if possible, link up with a Movement Disorder Specialist.

    10 Breakthrough Therapies for Parkinson’s Disease The NPF Medical Director, Dr. Michael Okun, has published a new book covering new therapies for PD.  I purchased a copy the day it was released and it is an excellent book, as was his first book,  “Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease”.  He has an excellent writing style and there are chapters covering new drugs (released and in the pipeline), effects of exercise, coffee, tea and Marijuana, new DBS advances and stem cell therapies among others.  I highly recommend both of his books.

    How Do I Know If I’m Doing the Right Thing When I Exercise?
    A post from PD Gladiators, an Atlanta based non profit devoted to combating PD with vigorous exercise.  There has been a lot of emphasis on the benefits of exercise and this post discusses what exercise is optimal and how often you should exercise.

    Delay the Disease, an Ohio based exercise program, is offering the Handwriting Challenge This program involves doing four simple exercises every day for 12 weeks.  The exercises should take about 10 minutes to complete and are designed to test a theory they have that large muscle exercises will improve motor dexterity including micrographia (tiny handwriting).  Every three weeks you write out the same sentence with the hope that your handwriting improves. Even if it doesn’t the exercises can’t hurt!

    What’s It Like Having PD   An excellent post by Bruce Ballard who blogs as Parking Suns. Those of us with PD will agree with these ideas to simulate PD for people who don’t have PD.  I found numbers 1 and 2 an accurate description of what it feels like without medication, I’m sure you will find a few that match your symptoms too.

    Coming up, Mara and I will be attending the second “Rallying to the Challenge” event organized by the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids, MI at the end of September.  I wrote about the first meeting here and this years meeting will center on how to introduce new technology and additional personalized patient-centric measures into clinical trials.  We are looking forward to catching up with members of our Global support group, meeting new members and enjoying the ArtPrize festival in downtown Grand Rapids.

    OK, if you have followed every link in this post, you have a bunch of tab’s open and your browser is getting ready to explode so I’ll stop with a quick reminder, sign up for Fox Trial Finder (click on the button above and open one more tab).

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