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

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

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

This has been a busy month of events, travel and, of course, exercise. Here are some of the highlights.

We started the month by attending the Davis Phinney Foundation Victory Summit in Punta Gorda, FL (about an hour away). This was our second time to attend one of these events and it was even better than the first time. The event included motivational talks by Davis Phinney and Tim Hague who, with his son, won the first Amazing Race in Canada. In addition our event featured presentations by local medical personnel and support groups and a presentation by Connie Carpenter-Phinney about care partner strategies. If you get a chance to attend a Victory Summit (check the website for locations and dates), I highly recommend it.

Next we took a road trip from Sarasota to Hilton Head Island, SC to visit friends. On the way there and on the way back we stopped off in Amelia Island, FL where we enjoyed hiking at Fort Clinch State Park and Big and Little Talbot Islands State Parks.

After hiking, we took the car ferry across the St John River to Mayport, FL for a great sea food lunch before heading home.

The next event was lunch with friends at Frenchy’s Outpost Bar and Grill in Dunedin Fl where Mara saw this piano and is making plans to decorate our piano we have in Tennessee.

After lunch we went to Honeymoon Island state park and hiked the trail to an eagles nest where one eagle was on the nest and the mate appeared in a tree close by, you can just make them out in this photo. (even with the red arrows!)

Our next trip was going to West Virginia University Medical School in Morgantown, WV to watch our grand daughter Breanna receive her White Coat, signifying completion of two years of medical school and her transition to clinical training which will start this summer. We enjoyed the ceremony and Morgantown, cold weather and all!

So that’s a quick look at what’s been happening this month. We continue to shoot for at least an hour of exercise per day choosing from tennis, PD in Motion Dance Class, various classes at the YMCA (yoga, tai chi, and others) and Pedaling for PD. Yet another study by Northwestern was released in the last week or so showing the benefits of at least 150 minutes per week in slowing the progression of PD. And the best exercise??? The one you will do!!!

On April 1, we will attend the National Parkinson’s Foundation Moving Day Walk in Tampa. This will be our first Moving Day Walk and we are looking forward it as we kick off Parkinson’s Awareness Month.

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

Tag: Travel

It’s Been a Busy March!

This has been a busy month of events, travel and, of course, exercise. Here are some of the highlights.

We started the month by attending the Davis Phinney Foundation Victory Summit in Punta Gorda, FL (about an hour away). This was our second time to attend one of these events and it was even better than the first time. The event included motivational talks by Davis Phinney and Tim Hague who, with his son, won the first Amazing Race in Canada. In addition our event featured presentations by local medical personnel and support groups and a presentation by Connie Carpenter-Phinney about care partner strategies. If you get a chance to attend a Victory Summit (check the website for locations and dates), I highly recommend it.

Next we took a road trip from Sarasota to Hilton Head Island, SC to visit friends. On the way there and on the way back we stopped off in Amelia Island, FL where we enjoyed hiking at Fort Clinch State Park and Big and Little Talbot Islands State Parks.

After hiking, we took the car ferry across the St John River to Mayport, FL for a great sea food lunch before heading home.

The next event was lunch with friends at Frenchy’s Outpost Bar and Grill in Dunedin Fl where Mara saw this piano and is making plans to decorate our piano we have in Tennessee.

After lunch we went to Honeymoon Island state park and hiked the trail to an eagles nest where one eagle was on the nest and the mate appeared in a tree close by, you can just make them out in this photo. (even with the red arrows!)

Our next trip was going to West Virginia University Medical School in Morgantown, WV to watch our grand daughter Breanna receive her White Coat, signifying completion of two years of medical school and her transition to clinical training which will start this summer. We enjoyed the ceremony and Morgantown, cold weather and all!

So that’s a quick look at what’s been happening this month. We continue to shoot for at least an hour of exercise per day choosing from tennis, PD in Motion Dance Class, various classes at the YMCA (yoga, tai chi, and others) and Pedaling for PD. Yet another study by Northwestern was released in the last week or so showing the benefits of at least 150 minutes per week in slowing the progression of PD. And the best exercise??? The one you will do!!!

On April 1, we will attend the National Parkinson’s Foundation Moving Day Walk in Tampa. This will be our first Moving Day Walk and we are looking forward it as we kick off Parkinson’s Awareness Month.

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

March 31, 2017
Is Anybody Out There? (Part Two)

I realize that I should have included these photos with the last post about our activities for the last two months. Hover over the picture for captions.

So there you have it, in two posts we are up to last weeks World Parkinson’s Congress meeting in Portland, OR. Those adventures will be up next!

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

September 26, 2016
Hello, Is Anybody Still Out There?
It has been 2 months since my last post (good thing I didn’t promise to post more this year!)and it wouldn’t surprise me to find out no one is following this blog anymore. it has been a busy two months and as you will see below, I am probably 3 or 4 posts behind. So today’s post is a short one to let you know I’m still kicking and will catch up soon.

Wondering what’s been going on since July 24th? Here is the short version in chronological order:
- Daughter Holly and grandchildren Charlie and Kayla along with Kayla’s friend Anna visited the Lake Cottage
- I turned 70!
- We met up with son Ryan, his wife Sarah, and grandson Julian in Sonoma and San Francisco to celebrate Sarah and my birthdays
- We stopped off in Colorado on the way home to visit friends in Aspen and Denver and family in Denver and Colorado Springs
- We packed the van to the top and moved most of the house to Sarasota for our Sarasota Experiment Part Two(A)
- We hosted this year’s 3 M (Mara, Mary Ann and Marilyn) reunion in Sarasota
- We flew to Seattle to visit family before the World Parkinson’s Congress started in Portland
- Sons Dale and Ryan and I flew into Walla Walla, WA for a big birthday celebration (Ryan’s 40th, Dale’s 50th and my 70th) which included winery and brewery tours in a Tesla Model X (yep the one with the gull wing doors!) and
- We just completed the week long 4th World Parkinson’s Congress in Portland where we served as volunteers. This event will probably take two or more posts by itself, it was an amazing time.
Whew! No wonder I’m tired!!! So as you can see, a lot has been going on and I owe you a few posts with some details which I will start working on forthwith. It may take a few weeks to get it all published but I’m going to try and get it done in shortly after we return to Sarasota next week.

More to come.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
September 24, 2016