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Now What?If you have recently been diagnosed with Parkinson’s Disease and are wondering what to do next, Click Here for some recommendations.
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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

December 24, 2015
Home
About Me
On Line PD Resources
PD Glossary
My Book List
My Blog List
SOPD – SummariesLinks to Simon Stott’s excellent monthly and yearly research summaries in plain english1!
Now What?If you have recently been diagnosed with Parkinson’s Disease and are wondering what to do next, Click Here for some recommendations.
Archives
Contact
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.

November 30, 2015
Home
About Me
On Line PD Resources
PD Glossary
My Book List
My Blog List
SOPD – SummariesLinks to Simon Stott’s excellent monthly and yearly research summaries in plain english1!
Now What?If you have recently been diagnosed with Parkinson’s Disease and are wondering what to do next, Click Here for some recommendations.
Archives
Contact
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!
November 26, 2015

My Blog List

Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites. As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).

Parkinson’s Organizations

Parkinson’s Today Blog (National Parkinson Foundation)
Fox Feed (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium (new)

Medical Professionals

Parkinson’s Secrets by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me a online support group
Jon Palfremans Blog from The Journal of Parkinson’s Disease.
Unshakeable MD by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers

Blogs by Persons with Parkinson’s

Tremors in the Universe by Robert Baittie
Hiyaitsfiona.Blog by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church

Parkinson’s News Aggregators

These sites provide a daily or weekly list of news items about Parkinson’s Disease

Parkinson’s News Today (new)

Seasons Greetings!

Giving Tuesday is Almost Here!

Happy Thanksgiving!

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Parkinson’s Organizations

Medical Professionals

Blogs by Persons with Parkinson’s

Parkinson’s News Aggregators

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

My Blog List

Parkinson’s Organizations

Medical Professionals

Blogs by Persons with Parkinson’s

Parkinson’s News Aggregators