Happy New Year!! I don’t know about you but I have never been so happy to leave a year behind. It has been a year of trials and tribulations and wrinkled hands from so much washing. We have averaged 5 – 7 books per week since March, lived through almost 3 months with no tennis and discovered Zoom can be used for just about everything from exercise classes to family gatherings.

We have survived not eating out unless we can eat outside, wearing a mask everywhere you go, and not hugging. We go nowhere except to the grocery store and the tennis court which has reduced gasoline use and carbon in the air.

I could go on and on about what we will not miss about 2020 but we did learn some lesson from 2020. I received this list from a good friend and reader of this blog and I thought I would pass it along to you all.

It has been about 5 months since my last post but with the COVID-19 restrictions there is very little news to report. As noted above, we have been playing tennis with a small group (our pod) and the ever resourceful Pedaling for PD instructor Kathy has been teaching classes 3 days a week via Zoom. I purchased a spin bike for home in order to keep up with the exercise as much a possible.

I finally had a face to face visit with my neurologist in October which went well with no changes to medications or routines. I also met with a speech pathologist and we decided the Speak Out! program would be beneficial as my voice has been getting softer and softer requiring me to repeat myself often.

Speak Out! is a program where you meet one on one with the speech pathologists three times a week for four weeks and learn to speak with intent! The sessions were very focused on improving the volume of my voice using breathing exercises, visualising projecting my voice and practicing going from low to high and back while saying ahhhh. In addition to the voice exercises, they also have cognitive drills for each lesson and a reading aloud exercise. I found the program to be very beneficial and I have continued to work at speaking with intent everyday.

We spent the holidays at home with no family visitors for the first time that we can remember. Hopefully next year we can return to normal as the vaccine is rolled out.

Speaking of the vaccine, through a combination of serendipitous events, Mara and I received the first Moderna shot last week and are scheduled for the second shot in early February. Sarasota county opened appointments for persons 65 and over using an online reservation system. Because I had signed up for text messages from the county back in March, I received a text message that they were taking appointments and was able to schedule both of us before they were filled up. The process worked very smoothly when we arrived at the County Health Department. While there was a long line, it turned out they were people without an appointment hoping to get the vaccine by waiting.

Since we had an appointment, we went to the head of the line and were in and out in approximately an hour including a 15 – 20 minute observation period after the shot. So far we have had no major complications beyond some pain at the injection site. I will update you when we get the second shot as I have heard that is when they expect more minor complications will occur since your body has been making antibodies to fight the virus.

A reminder – if you haven’t already joined PD Avengers, please click here and add your name to the list of supporters. We are hoping for 1 million supporters by 2022 and together we are fighting to END PARKINSON’S!

I hope this post finds you healthy and not totally bored out of your mind. Please mask up, practice social distancing and stay safe!

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

Join PD Avengers & Let’s End PD!

Last month marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist. During the past 7 years I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD, and moved to Florida.

Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD. A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive. The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming pandemic and action needs to be taken to end PD. You can read my blog post about the book here.

Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat) a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s. They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s. I have added my voice and have become a PD Avenger and I hope you will too! You can find out more information and add your voice at PDAdvengers.com. Together we can END PARKINSON’S!!

Sample Posts #4

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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