• PD School – 2020

    Some of you may be familiar with Dr. Laurie K Mischley from Bastyr University in Seattle. She has a medical degree in Naturopathic Medicine and specializes in the nutritional requirements for neuro degenerative disorders. She has spent over 10 years working with PD patients and has a clinical trial going on regarding Complementary and Alternative Medicine (CAM) in PD where participants (I have been one since 8/2014) complete a series of surveys every 6 months to report the status and progression of their PD and we also compete a 24 hour food diary. She has presented programs at the World Parkinson’s Congress and other research meetings and she is considered an expert in the nutritional needs of PD patients.

    In addition to seeing patients and conducting research, Laurie also hosts a week long Parkinson’s Summer School at Baystr and she is now offering PD School 2020, an on line course.   She describes the course as follows:

    Parkinson’s School was created to be a resource for patients and their family members. Clinic visits are too few and far between and patients have questions that are going unanswered. Over the past 10 years I’ve treated over 3000 patients with Parkinson’s and these courses represent the themes I find myself repeating.

    Throughout 2020, a new course will be released on the 14th and 28th of every month. Comments and course discussion will be open for the two weeks after each course to allow time for questions. After comments close, you will continue to have unlimited access to the videos and may watch them as often as you’d like.

    As far as I know, online education programs to teach patients to better navigate their disease do not exist. I’m hoping this program will stimulate conversation, collaboration, and a sense of empowerment throughout the community.

    You can register for the course here. The cost of the course is $10 per lesson or $150 for all 24 lessons.  Use coupon code NWPF-HOPE for a 20% discount bringing the price down to $120 for all 24 lessons. Below are the topics that will be covered during the year so you can pick and choose if you don’t want to sign up for the entire course. 

    You can watch the welcome for no charge where she discusses her background and credentials and the outline of the course so you have a better idea of what will be offered before you commit to taking the courses. I have signed up for the full course and I have included my thoughts about the first course below.

    Lesson One – Orientation

    I think this is the video we wish we could have viewed when we were first diagnosed.  It covers what PD is and how it is more than the motor symptoms that affect us and what we can do to delay or reverse it.  If you are on the fence about taking the course I highly recommend  you purchase the first lesson for $10 just for the knowledge you will gain about Parkinson’s, how it progresses and what she has been doing to reverse or slow progression. 

    She and her research team have created a PD scoring system that is easy to complete and correlates well with the UPDRS and other tests we often take at the Doctor’s office for both diagnosis and current status.  Her goal is to reduce your score by the end of the year.  The PRO PD test is available to anyone at propd.org.  There is no cost and it takes about 5 minutes to complete and get a score.  I took it and ended up with a score of 744.  I have asked for my previous scores from my participation in the CAM trial and will be interested to see if there is a change and which way, since my exercise level now is about double what  it was in 2014/15.

    All of her ideas are supported by slides that contain relevant research reports along with supporting data from the CAM study. This class is interesting and provides a wealth of information for PwP’s. I will keep you posted as I progress through the remaining classes.

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

    PS: I just received an email from National Parkinson’s Foundation, Dr. Mischley is the featured expert on their next Expert Briefing webinar on March 17, 2020 from 1pm – 2pm ET. More information is available here If you are reading this post after 3/17/2020, all of the webinars are recorded and made available on their website.

  • Happy New Year!

    OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

    Here’s what’s happened in our world since my last post:

    We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

    I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

    We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

    Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

    If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

    I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

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

  • Happy Thanksgiving

    Wow, it is already Thanksgiving Day and that means this year is almost over! Seems like it was just New Years Day last month. We are in Knoxville for the weekend but I wanted to wish you all a Happy Thanksgiving and best wishes for the Holiday season.

    A quick reminder that following Black Friday tomorrow and Cyber Monday is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause.  Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities.   It is a great opportunity to make a difference.

    You might recall from my last post that the YMCA where I take my Pedaling with Parkinson’s class was scheduled to close September 13, 2019. This announcement caused a massive outburst from members and the community of Sarasota resulting in a new entity being formed to take over the two fitness centers. But it went right down to the wire (in fact they actually closed as scheduled and then reopened 3 days later) before we knew if we would have class the week of September 16th. So our coach had branched out and we had a plan in place to move our class to HealthFit, the gym where I first started cycling for PD. (You can read my post about that experience here. )

    When we were able to save the YMCA, she continued to coach a class at HealthFit and I have started going to that class when possible to up my cycling days to the recommended 3 times per week. I still feel this is the best exercise I have found for slowing the progression of my PD. Studies continue to show that high intensity interval training improves dopamine production while providing cardio benefits and slowing progression. If you are on the fence about trying cycling take a look at this recent study reported on the Science of Parkinson’s blog.

    We are excited for the ‘winter’ weather here in Florida, it has made our almost daily tennis games much more pleasant and enjoyable. We are playing most days and occasionally we even play twice a day! I don’t know why we aren’t on the senior tennis circuit, surely all this training should turn us into another Roger Federer or Ashleigh Barty!! I guess we will just have to keep it up until it happens 🙂

    Coming up – Parkinson’s Revolution – an indoor cycling experience taking place February 8 sponsored by the Parkinson’s Foundation. This event combines passion, determination and community to generate awareness and advance our mission toward a cure. You can find more information here and I will post more information on the blog as our plans firm up.

    Have a great holiday season!

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

Seasons Greetings!

Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

Happy Holidays!

Tom and Mara

Seasons Greetings!

Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

Happy Holidays!

Tom and Mara

Year: 2015

  • Seasons Greetings!

    Hard to believe the year is almost over!  It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule.  In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.

    Happy Holidays!

    Tom and Mara

  • Giving Tuesday is Almost Here!

    Tuesday, December 1st is Giving Tuesday. Black Friday is over and Cyber Monday is almost over and Tuesday will be a great opportunity to take some (or all) of the money you saved this weekend and give back by making a donation to a Parkinson’s Disease organization or another cause of your choice. As in past years, many charitable organizations have a matching plan that will double your Giving Tuesday donation for double the benefit.

    In case you need a little inspiration, I am reposting the following article “What is a Parkie? And Why are They so Expensive?“.  This article was written by Alan Zimmerman vice president of the East Tennessee Parkinson’s Support Group and posted on their website,  PK Hope is Alive . Alan is a strong and active advocate for Parkinson’s research and education. In addition to being Vice President of the group, he is the Assistant Tennessee State Director for the Parkinson’s Action Network (PAN) and a member of the Parkinson’s Disease Foundation (PDF) People with Parkinson’s Advisory Council.

    Take some time on Tuesday and support the cause of your choice,  There is a lot of exciting news on the research front and our donations can make a difference!  Happy Holidays!!

     

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

     

    WHAT IS A PARKIE? AND WHY ARE THEY SO EXPENSIVE?
    by Alan Zimmerman
     
    Parkies are expensive devils.  How does $25 Billion per year in the US sound to you?  Not only that,we discover another 60,000 Parkies each year, right here in good old America.  That number that is guaranteed to rise.  And, each Parkie spends about $2500 per year trying to be less Parkie with an assortment of medications and untold more on supplements.
    So, what then is a Parkie?  It is what people with Parkinson’s disease call each other.  Yep, the term is pretty much reserved for those in the Parkie club.  They would rather be known by everyone else as people with Parkinson’s (PWP).
    I know that you know someone who is a PWP.  You may even have a relative with PD.  You have seen them taking short steps and all bent over and very stiff and slow, or maybe they are using a walker to get around or perhaps they shake uncontrollably.  Maybe you can’t hear or understand them when they talk.  Perhaps you, nor they can read their handwriting.  The list goes on and on.
    Who gets this disease?  Men are slightly more likely and most people are in their 60’s when diagnosed.  But, about one in ten are 45 or under.  By the time your symptoms are bad enough to be diagnosed, one has already lost more the 60% of their dopamine.  You see, that marvelous thing called a brain compensates until it no longer can.  Unfortunately, that is not the blessing it seems to be.  As more interventions are developed, the sooner the diagnosis, the better.
    Wait!  We have new terms: diagnosis and dopamine.
    Let’s take “diagnosis” first because most everyone has had at least one of those.  In the case of Parkinson’s there is no definitive way of diagnosing except by physical exam.  And, it really needs to be done by a neurologist who specializes in movement disorders.  There is no blood test or scan that will determine for sure that the monster called PD has attacked.
    What’s “dopamine?”  It is a chemical found in the brain.  What does it do?  Lots of things that we know about and probably some yet to be discovered.  For one, it is a communicator.  Somehow it signals the muscles to do whatever the brain tells them to do.  It also has something to do with mood, pleasure, depression and many other important functions.
    What causes this PD thing?  Nobody knows for sure but most scientists believe it is probably a combination of genetics and something in the environment, like heavy metals, toxins, or pesticides that trigger the beginning of the disease.  That is pretty much where science is.  OK, so where does it start?  Nobody is sure where exactly but some of the latest thinking is that it starts in the gut or maybe even the intestines.
    So, bottom line, what is the cure?  There isn’t one.  It just gets worse over time as more brain cells die.  OK then, what is the treatment?  Mostly, at this stage in modern medicine, only symptoms can be treated.  A few things may slow it down like exercise programs.
    We also have this thing called Deep Brain Stimulation (DBS).  Hold on, what’s that?  It may scare you if I tell you but here goes.  DBS is where a PWP has one or preferably two holes drilled in the scull.  Then you insert electrodes into certain places in the brain.  Then, you attach all that to a battery which is eventually buried into your upper chest.  Oh, I forgot to tell you.  Usually the patient is awake when those electrodes are being put in place.  Why?  So that the neurosurgeon can get feedback from the PWP.
    So, I guess we need more research.  There is a bunch going on world-wide, but we could always use more.  Researchers eat and have families and require laboratories.  What that means is that research has a price tag.  What a price tag means is that more donations are required.
    What else is needed?  More movement specialist physicians for one.  There are not enough now and certainly too few going to school while the Parkie population increases.  So, we need to encourage doctors to devote an extra two years of their life learning the intricacies of movement.  Guess what?  That too carries a pretty hefty price tag.  So, we need more scholarships which means we need more donations yet again.
    So, let’s review.  People with Parkinson’s are growing in numbers rapidly.  The disease is progressive and degenerative.  So far, we can pretty much treat the symptoms only.  But, through massive research, we believe that disease altering therapies are going to become a reality pretty soon.  What is pretty soon?  Maybe 5-10 years.  But, that only happens with support for research, i.e. donations.
  • Happy Thanksgiving!

    Just a quick post wishing everyone a Happy Thanksgiving from Seattle.  I have much to be thankful for this year including:

    • making a change to a Movement Disorder Specialist who recommended a medication change that resulted in a great reduction of my symptoms;
    • and that improvement allowed me to increase my exercise time which also helped to reduce rigidity and increase my mobility; 
    • and the increased mobility gave us a chance to travel to visit family and friends across the country;
    • and I got to fish almost every day I was home without having to sit down after 15 minutes to rest!

    But most of all I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my wandering posts.  I hope I have provided information of value to PwP’s and others through this blog and the Tennessee Parkinson’s Resources site that we started this year.

    Thank you all and Happy Thanksgiving!