• 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!

     

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