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!

Tag: Travel

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
Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!

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

November 15, 2015
The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.

First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.

The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.

It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)

We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.

We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.

Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.

And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.

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

May 25, 2015