Some of you may be familiar with Dr. Laurie K Mischley from Bastyr University in Seattle. She has a medical degree in Naturopathic Medicine and specializes in the nutritional requirements for neuro degenerative disorders. She has spent over 10 years working with PD patients and has a clinical trial going on regarding Complementary and Alternative Medicine (CAM) in PD where participants (I have been one since 8/2014) complete a series of surveys every 6 months to report the status and progression of their PD and we also compete a 24 hour food diary. She has presented programs at the World Parkinson’s Congress and other research meetings and she is considered an expert in the nutritional needs of PD patients.

In addition to seeing patients and conducting research, Laurie also hosts a week long Parkinson’s Summer School at Baystr and she is now offering PD School 2020, an on line course. She describes the course as follows:

“Parkinson’s School was created to be a resource for patients and their family members. Clinic visits are too few and far between and patients have questions that are going unanswered. Over the past 10 years I’ve treated over 3000 patients with Parkinson’s and these courses represent the themes I find myself repeating.

Throughout 2020, a new course will be released on the 14th and 28th of every month. Comments and course discussion will be open for the two weeks after each course to allow time for questions. After comments close, you will continue to have unlimited access to the videos and may watch them as often as you’d like.

As far as I know, online education programs to teach patients to better navigate their disease do not exist. I’m hoping this program will stimulate conversation, collaboration, and a sense of empowerment throughout the community.“

You can register for the course here. The cost of the course is $10 per lesson or $150 for all 24 lessons. Use coupon code NWPF-HOPE for a 20% discount bringing the price down to $120 for all 24 lessons. Below are the topics that will be covered during the year so you can pick and choose if you don’t want to sign up for the entire course.

You can watch the welcome for no charge where she discusses her background and credentials and the outline of the course so you have a better idea of what will be offered before you commit to taking the courses. I have signed up for the full course and I have included my thoughts about the first course below.

Lesson One – Orientation

I think this is the video we wish we could have viewed when we were first diagnosed. It covers what PD is and how it is more than the motor symptoms that affect us and what we can do to delay or reverse it. If you are on the fence about taking the course I highly recommend you purchase the first lesson for $10 just for the knowledge you will gain about Parkinson’s, how it progresses and what she has been doing to reverse or slow progression.

She and her research team have created a PD scoring system that is easy to complete and correlates well with the UPDRS and other tests we often take at the Doctor’s office for both diagnosis and current status. Her goal is to reduce your score by the end of the year. The PRO PD test is available to anyone at propd.org. There is no cost and it takes about 5 minutes to complete and get a score. I took it and ended up with a score of 744. I have asked for my previous scores from my participation in the CAM trial and will be interested to see if there is a change and which way, since my exercise level now is about double what it was in 2014/15.

All of her ideas are supported by slides that contain relevant research reports along with supporting data from the CAM study. This class is interesting and provides a wealth of information for PwP’s. I will keep you posted as I progress through the remaining classes.

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

PS: I just received an email from National Parkinson’s Foundation, Dr. Mischley is the featured expert on their next Expert Briefing webinar on March 17, 2020 from 1pm – 2pm ET. More information is available here If you are reading this post after 3/17/2020, all of the webinars are recorded and made available on their website.

Happy New Year!

OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

Here’s what’s happened in our world since my last post:

We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

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

Happy Thanksgiving

Wow, it is already Thanksgiving Day and that means this year is almost over! Seems like it was just New Years Day last month. We are in Knoxville for the weekend but I wanted to wish you all a Happy Thanksgiving and best wishes for the Holiday season.

A quick reminder that following Black Friday tomorrow and Cyber Monday is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause. Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities. It is a great opportunity to make a difference.

You might recall from my last post that the YMCA where I take my Pedaling with Parkinson’s class was scheduled to close September 13, 2019. This announcement caused a massive outburst from members and the community of Sarasota resulting in a new entity being formed to take over the two fitness centers. But it went right down to the wire (in fact they actually closed as scheduled and then reopened 3 days later) before we knew if we would have class the week of September 16th. So our coach had branched out and we had a plan in place to move our class to HealthFit, the gym where I first started cycling for PD. (You can read my post about that experience here. )

When we were able to save the YMCA, she continued to coach a class at HealthFit and I have started going to that class when possible to up my cycling days to the recommended 3 times per week. I still feel this is the best exercise I have found for slowing the progression of my PD. Studies continue to show that high intensity interval training improves dopamine production while providing cardio benefits and slowing progression. If you are on the fence about trying cycling take a look at this recent study reported on the Science of Parkinson’s blog.

We are excited for the ‘winter’ weather here in Florida, it has made our almost daily tennis games much more pleasant and enjoyable. We are playing most days and occasionally we even play twice a day! I don’t know why we aren’t on the senior tennis circuit, surely all this training should turn us into another Roger Federer or Ashleigh Barty!! I guess we will just have to keep it up until it happens 🙂

Coming up – Parkinson’s Revolution – an indoor cycling experience taking place February 8 sponsored by the Parkinson’s Foundation. This event combines passion, determination and community to generate awareness and advance our mission toward a cure. You can find more information here and I will post more information on the blog as our plans firm up.

Have a great holiday season!

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

Tag: Parkinson’s Disease

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
Anniversaries abound!

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

August 8, 2015
On the Road Again!

Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.

So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.

With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.

Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!

Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.

After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.

This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:

SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.

Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”

I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!

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

June 19, 2015