April is Parkinson’s Awareness Month and this Thursday, April 11th, is World Parkinson’s Day. This year, our cycling group at the YMCA decided to do something to increase awareness of PD. We are moving our usual Thursday Pedaling for Parkinson’s class from from the cycling class room to the lobby of the Y. We have invited all of the local neurologists and Movement Disorder Specialists,along with local Parkinson’s groups and the media to come and see what Pedaling for PD is all about. So if you are in the Sarasota area this week, stop by the Evalyn Sadlier Jones YMCA at 8301 Potter Park Dr at 10am to see Pedaling for Parkinson’s in action.

Those of you who have been following this blog for very long know that I feel that this program has slowed the progression of my PD. When I miss a class or two I have seen a noticeable change in the time my medication lasts. The medication seems to wear off sooner than usual and take longer to ‘kick in’ after I take a new dose. I know I have pushed exercise over and over in this blog but I can’t emphasize it enough. There are many opportunities to exercise besides cycling or playing tennis – you just need to find one you like (or dislike the least) and stick with it for a month and see if you don’t agree, exercise is the key ingredient to fight PD.

Speaking of medication, I was doing great on the new regime of two Rytary and 1/2 a tablet of Mirapex 5 times a day until a couple of weeks ago when it suddenly stopped working so well. I would take the 1st dose of the day and it worked perfectly but when I took the second dose it would sometimes have the opposite effect, causing me to walk slowly with limited arm movement as though I was completely unmedicated. This would last up to 2 hours and then I experienced “wearing on” instead of wearing off as the meds finally kicked in.

So I emailed my Dr and while waiting for his response did what many of us do, researched the internet for other people who have experienced the same effect and then started experimenting with different dosages and the timing of the dose. I am getting pretty good results reducing the Rytary to 1 for doses 2 and 4 but I will keep you posted as this saga continues. In the meantime today my ninety day supply of meds arrived, I need a shelf just for the Rytary 😀

Happy New Year!

Well maybe it should read Happy Chinese New Year! It’s February already and I’m just getting to my first post for the new year! I hope everyone had a great holiday season. We had a great time with family over the Christmas/New Year holiday which included a trip to Disney World to celebrate New Year’s Eve.

During the busy holiday season, we tried to keep up with our exercise schedule, cycling two days a week, playing as much tennis as possible and attending the Dance for PD class every week. I continue to enjoy playing tennis and even played in a men’s double tournament here in our community finishing in the middle of the pack.

January included a visit to my Neurologist. While I am doing well I was noticing that my medication wearing OFF anywhere from 30 – 60 minutes before the next dose, particularly when the next dose occurred while I was exercising. We discussed two options, change the timing so I would take more Sinemet or try Rytary, an extended release version of Levodopa/Carbidopa.

We decided to try the Rytary and I was given a sample to take once a day in the morning for a week. After the initial week I found that ON time was at least 30 – 60 minutes longer and some days I noticed no wearing off at all between doses.

So I reported my findings back to my Doctor and we decided to go ‘full bore’ and replace my Sinemet tablets with the Rytary on a every 4 hour schedule. So far I am happy with the results with only occasional OFF periods, usually because I didn’t take them on schedule 🙂 I’ll keep you posted as I continue this new regimen.

On the research front, if you are interested what’s coming up in 2019, I highly recommend you read “The Road Ahead: Parkinson’s Research in 2019” by Simon Stott over at the Science of PD blog. He expects that several clinical trials will have some data to report during the year and several promising projects will start. Click here to read.

One last note, I have added a link on the website to a document I prepared recently for a friend of a friend who had just been diagnosed with PD. It contains my thoughts about what to do after that initial diagnoses, lots of links to sites I like, and my thoughts / recommendations about exercise, finding a Movement Disorder Specialist, etc. Click on the link in the Now What? box at the top right to view, print or download.

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

Rallying, Parkinson’s Movement Website, Care Partners Month, and Giving Tuesday!

Yep, as you can tell by the title, this a catch up post lightly touching on many topics. For various reasons, it has been tough to find time for writing but I have a chance today so will try to cover all of these topics (and maybe more) in this post. Let’s get started!

Rallying to the Challenge – 2018

As you might recall from my last post, we had just attended the Grand Challenges in PD meeting in Grand Rapids MI. This is a two day meeting that brings together scientists, clinicians and people with Parkinson’s to explore the latest in Parkinson’s disease research. The meeting is hosted by the Van Andel Research Institute and includes a parallel meeting for PwP’s hosted by Van Andel and The Cure Parkinson’s Trust. This is one of the few meetings that brings us all together and gives the Parkinson’s community a chance to provide input impacting ongoing and planned research. Even better, we got to say hello to many old friends while making many new friends as the meeting progressed. At the end of the meeting, the Cure Parkinson’s Trust presented the Tom Isaacs Award to two outstanding individuals, Professor Bas Bloem of the Netherlands who founded ParkinsonNet, an innovative PD care program and Simon Stott, who publishes the Science of PD Blog about current research in PD which I have mentioned in previous posts.

It was a great meeting and you can read more about it here and here. Next year’s meeting is set for August 21 and 22 in case you would like to attend, click here for more information.

Parkinson’s Movement Website

The Cure Parkinson’s Trust sponsors the Parkinson’s Movement website which is maintained by PwP’s for PwP’s. This website has recently had a total makeover and I highly recommend you add it to your list of sites to visit on a regular basis. The site has information about on going research and provides opportunities to get involved in research or share your insights. They have a section called Hype vs Hope where they ‘fact check’ recent news stories, claims of a cure, etc. They also have have a large list of PD advocates listed along with their country of residence, the topics they advocate for and other information. Check it out here.

Care Partners Month

November is National Care Partners Month and I know that you, like me, are thankful for your care partner(s) everyday of the year. But this is a good time to remind you and your care partner that there are a lot of resources available for care partners including the Caring and Coping guide written for care partners for any stage of PD and available for the Parkinson’s Foundation. You can download a copy or order a paper copy here

Giving Tuesday

Tuesday the 27th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example, after successfully raising one million dollars last year, the Michael J Fox Foundation is shooting to raise two million dollars this year with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

(And Maybe More)

Ben Stecher who writes the Tomorrow Edition blog has started a 9 part series about the Search for a Cure. The first part was just published and can be viewed here. Ben has traveled the world interviewing researchers, medical professionals and others about what they are doing and what the impact might be on the search for a cure, what the cure might look like and when it might happen. So, another recommendation, sign up to follow Ben’s blog and his search for the cure.

Dr Ray Dorsey at the University of Rochester in New York is conducting a web based study to see if using a computer with a webcam and microphone will provide sufficient information for patient followup. The entire study is web based and takes about 10 – 15 minutes. It requires a computer with webcam and the Chrome browser but it is quick and easy and a chance for you to participate in a clinical trial without leaving your house. You can get more information and participate in the trial at this website.

OK that wraps it up for this post. I hope everyone has an enjoyable Thanksgiving Holiday!

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

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

Year: 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
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

July 20, 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