Events Calendar

  • Tue 12/15/2015: Parkinson's Holiday Party
  • Tue 1/19/2016: What's New with Nutrition in Parkinson's
  • Tue 2/16/2016: Long Term Care Planning
  • Tue 3/15/2016: PD 101 - Back to Basics
  • Sat 4/16/2016: 5th Annual Parkinson's Walk

What is a Parkie? And why are they so expensive?

This is a great post written by Alan Zimmerman, Vice President of our support group. Alan is an active advocate for Parkinson’s research and education. In addition to being our VP, 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. In his ’spare’ time he finds time to  maintain the Knox Area Parkinson’s Club Facebook Page!

What is a Parkie?   And why are they so expensive?

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.

November is National Family Caregiver Month

This post is from the Parkinson’s Disease Foundation (PDF). Click here to visit the Parkinson’s Disease Foundation (PDF) website for more information.

Navigating the PD Partnership

By Rhona Johnson

Life with Parkinson’s disease (PD) has profound effects not only on the person who is diagnosed, but also on his or her family members and friends. More often than not, there is one person who takes on the role of primary care partner to the person who has PD.

I prefer to call this relationship a “care partnership” because I believe it is truly reciprocal. As a person with PD adjusts to physical changes and, at times, to changes in personal independence, the care partner must learn to adapt to a different relationship dynamic and perhaps to greater “ownership” of duties that their partner had previously handled (e.g., finances or household management). As a former care partner — my late husband, Bob, lived with PD — I have gained insight on what it is to be a care partner and what it is like to have PD.

Before I share our experiences, I ask you to keep two things in mind:

  • First, remember that your experience with Parkinson’s disease is unique. Parkinson’s disease is a chronic neurodegenerative disease. It progresses at different rates in different people and there is no way to accurately predict its course. So, there is no reason to look at people in the doctor’s waiting room and think, “that will be us in a few years.”
  • The second point, which is for care partners, is that while you did not choose this role — and in most cases were not trained for it — this does not mean that you cannot be good at it. Assess your individual strengths, which will shape your role as a care partner. Continue reading November is National Family Caregiver Month

Everyday Physical Activity Helps Parkinson’s Movement Symptoms

From Parkinson’s Disease Foundation

- Oct 13 2015

New research finds that participating in daily physical activities such as doing the dishes and folding laundry — rather than being sedentary — may help to ease some movement symptoms of Parkinson’s disease (PD). Among the small group of study participants, people who moved around on a daily basis for such non-exercise activities had less severe PD motor symptoms, even when accounting for PD progression as seen on brain scans. The research appears in the August 25 online edition of Parkinsonism and Related Disorders.

Recent research makes clear that regular exercise benefits people with PD — and suggests that inactivity contributes to difficulty walking, and hinders a person’s ability to carry out daily activities. Scientists led by Nicolaas I. Bohnen, M.D., Ph.D., investigated the degree to which inactivity contributes to motor symptom progression while taking into account brain changes that cause PD symptoms.

The study team at the University of Michigan’s Udall Center of Excellence for Parkinson’s Disease used positron emission tomography (PET) scans to assess dopamine loss in 48 people with PD, most of whom had moderately advanced PD (Hoehn and Yahr stage two or three). Study participants’ motor symptoms were evaluated with standard rating scales, and they reported their exercise and non-exercise physical activity on questionnaires administered over a four-week period. Continue reading Everyday Physical Activity Helps Parkinson’s Movement Symptoms