• 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!

     

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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