• Brrrr, It’s Cold!

    Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
     
    I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
     
    It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
    • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
    • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
    • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
    • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
    • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
      Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
    • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
      patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
     I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
     
     
    Happy New Year!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
     
     
  • Happy Holidays!

    Wow, here it is almost Christmas,  this year has just sailed by.  We are in Seattle to visit family, see our granddaughter dance in The Nutcracker and have an early Christmas before we go on to San Diego to visit more family and celebrate more Christmas!  I just wanted to take a moment and wish everyone a Happy Holiday Season.  This is a magical time of year and I hope you all enjoy  time with family and friends.  Thank you all for your support and positive thoughts as I continue my journey with Parkinson’s Disease.
    PS: Don’t forget, sign up for the Fox Trial Finder here!  Lets make 2015 the year of the CURE!
    PPS: It’s also time to sign up for the 2015 Mary-thon, an event that provides you with a reason to exercise at least 30 minutes a day,  5 days a week for 26 weeks. I wrote about the Mary-Thon last year in this post . No running is required, any form of exercise qualifies and a portion of your entry fee goes to Project Linus, a non-profit organization with chapters around the country that provide blankets to children who are seriously ill, traumatized, or in needy situations. Click on this link for more information about Project Linus and this link to sign up for the 2015 Mary-Thon which starts January 4th.
    Thanks again and have a Merry Christmas and a Happy New Year!
  • Volunteer and Help Find a Cure for PD!

     

    As promised in the last post, today I will discuss our experiences with clinical trials and the Fox Trial Finder (FTF) web application.  But first, are you on Fox Trial Finder? If not, click on this link and sign up today!  Currently there are 475 trials listed on FTF taking place in locations around the world. They include interventional trials (reducing tremor or dyskinesia, Tai Chi for balance, tele-medicine, etc.) and observational trials (bio markers, brain mapping, genetic research, wearable devices to measure PD, etc.). When you sign up for FTF you create a profile with information such as length of time with PD, medications, symptoms, and how far you are willing to travel to participate.  FTF then matches you to trials that fit your profile.  And don’t forget, most trials need control volunteers too so sign up your family and friends! Ready to sign up? Click on this link now! I’ll be here when you come back.

    Welcome back! Mara and I recently participated in an observational study titled LRRK2 and Other Novel Exosome Proteins in Parkinson’s Disease conducted by the University of Alabama at Birmingham.  The main purpose of this study is to determine whether there are biomarkers associated with Parkinson’s disease susceptibility and/or progression in exosome-proteomes derived from PD patients that will assist with future LRRK2 inhibitor clinical trials.  You can read the full description here on FTF but it’s not exactly written in layman’s terms. (Maybe this could be a simple change to the process?)

    After arriving at the UAB Medical Campus we were met by Rachel Clark who is coordinating the research study.  She went over the research protocol and we signed the consent forms; she then asked us questions about our general health and medications we take.  We both completed the Uniform Parkinson’s Disease Rating Scale (UPDRS) patient questionnaire and we were each given the Montreal Cognitive assessment. Then we took the Parkinson’s Smell Test which Mara did fine on and, surprise surprise, I didn’t.  Out of 40 samples I got 10 correct while Mara got 37. I was able to identify two odors and the rest were just lucky guesses. I was also given the general physical tests for PD (tap your fingers & toes, walk down the hall, etc.) and we both provided blood and urine samples.  That was it!  One and a half hours and we had provided them with the necessary information and samples and completed our first clinical trial! It wasn’t time consuming, I didn’t have to worry about receiving a placebo or changing my medications, and I was only poked enough to provide 1 ounce of blood.

    Many of the trials listed on FTF are observational studies like this one and seven are web based like the other trial I am participating in – Smartphone-PD. All of them provide valuable information in the search for a cure and all need participants. Did you click on that link yet?

    Smartphone-PD is a study to see if it is feasible for participants to download, install, and use an Android smartphone application to track data related to Parkinson disease symptoms. (Note: only available for Android phones)  They hope to measure daily variability of movement and mobility characteristics of PD patients. The data is collected by completing voice and movement tests using my cell phone.  The results of the daily tests are encrypted and uploaded to the study team at the University of Rochester in New York.  The application will also monitor my daily activity if I keep my phone in my pocket.

    I found this trial here on Fox Trial Finder and signing up is all done online. I reviewed the study plan and the consent form which includes the disclaimer that this study is purely for research purposes, so they will not be able to provide clinical advice for individuals with PD. Therefore, no adjustments to medications or appointments with a neurologist will be made as a part of the study.  After electronically signing the consent form, I received an email with a link to the application which I downloaded to my phone and I was ready to go.

    For this study I use my phone to complete five tests twice a day for six months.  The first time is in the morning prior to taking my medication and then again about an hour later.  They realize that you might not be able to complete the tests on that schedule but they are OK with that as all collected data is valuable. So it’s OK to miss a test day due to travel or whatever, they still want the information.So most every morning I open the application on my phone and spend five minutes completing the tests which include a voice test, a balance test, a gait test, a dexterity test and a reaction test. The results are sent off and I take my medications, have breakfast and try to remember to repeat the test an hour or so later. This study is actively recruiting on FTF or the Parkinson’s Voice site.   Both PwP’s and controls are needed. You can also contact Denzil Harris, the research coordinator by email or phone him at 585-275-2791 for more information.

    See, getting involved in a clinical trial is not as difficult as one might think, even if you live in a small town or aren’t close to a research center .  Using Fox Trial Finder to identify trials you might be eligible for takes just a little bit of your time and the rewards are many including that good feeling of being involved in the quest for a cure.   As I have said before, while patients and researchers work to change the current process, there are still many trials that need participants.  If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats some of our symptoms.   With 475 possible trials listed, I bet you can find one that interests you, so click on this link and join over 39,000 others on Fox Trial Finder today!

    (Updated 12/11 to add the links to Fox Trial Finder so it shows up in mobile device view with thanks to the Cure Parkinson’s Trust )

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

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

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

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

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.”  Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see  there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc.  Many of them can be done while seated and they will get you moving.  In fact both dance classes that we take and the senior fitness class provide a great workout while seated.  So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes.  I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC.  Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year.  If you are in the area, please join us on April 16th.  If you can’t join us, think about donating to our team PK Hope is Alive.  Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations.  Donation information is available on either of the links above.

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