It has been a busy September. We started the month with a trip to the Seattle area to visit family (here we are after a great brunch at Big Fish Grill), and now we are ending the month in Michigan where we just finished attending the Grand Challenges in Parkinson’s conference and will visit family before heading home to Sarasota.

This month we had appointments with our new Primary Care Physicians and our new Dentist and continued updating our home, painting some furniture and a hallway.

We also made a trip to Tampa to meet with my new Movement Disorder Specialist, Dr. Robert Hauser who heads up the University of South Florida Movement Disorder Clinic. Dr Hauser is involved in research and we discussed my participation in the Nilotinib study after I have been on my new medication routine at least 30 days. What new medication routine you ask? We are going to reduce the amount of pramipexole (Mirapex) that I take over the next month or so to see if that reduces both my daytime sleepiness and my shopping impluse control disorder (ICD). I, of course, don’t see anything wrong with ordering items from Amazon almost daily but I was overruled by the Dr., the PA, and Mara😀

Because of the possibility of dopamine agonist withdrawal syndrome, we will be reducing the dosage very slowly over the next several weeks. So far (3 days) I haven’t noticed any effect yet. Once we stabilize or completely stop the pramipexole we will look at alternatives for maintaining my dopamine level without increasing my off time.

In between our travels we continue to work on our tennis game, playing at least 7 – 10 hours a week when it wasn’t raining – it’s been a wet September in Florida. I recently read a guest post by Jan Jackson on the Out-Thinking Parkinson’s blog titled Tennis as Therapy for Parkinson’s. She is playing tennis 2 -3 hours a day almost every day of the week and seems to be holding off progression of her PD symptoms. Maybe I need to step up my time on the court!

I also continue to cycle for PD twice a week where we continue to push the high intensity intervals for 45 minutes each time. The need to exercise was discussed by several of the speakers at the Grand Challenges conference and the concept of HIIT was mentioned almost every time. I will cover the Grand Challenge conference in the next post. This was our third time to attend, you can read about the previous conferences here and here while you wait for the next post.

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

Me, a Tennis Hero?

We met Jean Kirshenbaum when we started playing tennis here in Sarasota with a regular group twice a week. Jean was not as mobile as some of the players but had an excellent serve and strong ground strokes and you could tell how much she enjoyed playing the game. Jean had suffered a stoke 15 years ago but had worked hard to return to the game she loved, even if she couldn’t play at the same level she was playing at before the stroke.

Earlier this year Jean began to have problems with her gait, her balance and with freezing in place (sound familiar?) which have prevented her from playing with the group. But Jean is not giving up, she writes columns for a tennis website, and recently wrote one that discussed her current conditions and what she is doing to try and overcome them. Part of that column includes her surprise when she found out I took up tennis as part of my plan to overcome PD. She has plans for both of us as you will see when you read her column here. I am honored that she mentions me in her column and I look forward to seeing her back on the courts soon.

While we have been busy the past few weeks with visits from grand children, we have continued to play tennis as much as possible and I continue to cycle whenever I can. Yesterday I discovered a new screen on my FitBit app that shows my heart rate during exercise. This screen shot is from today’s cycling session which consisted of a 10 minute warmup and then we continued to add gear while surging back and forth between 80 rpm and 90 rpm. As you can see our coach has taken the new concept of high intensity intervals to heart and this work out kept my heart rate in the cardio zone or above for almost the entire time. What I find most interesting is, despite my thought that I wouldn’t be able to walk out to the car, I did and now, 8 hours later, I feel great and have limited PD symptoms. There certainly seems be something that works when you exercise at a high level even for a short period of time. So if you have the opportunity to cycle or box or ????, do it! Exercise is the best prescription we can follow to slow the progression of PD (I know I haven’t said that recently 😆)

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

Five Years Ago…

…I received my Parkinson’s Disease diagnoses, a prescription and a 90 day followup appointment. Yep, that was it, no handbook, brochure or even a ‘what to expect’ message. A lot has happened since that day five years ago and most, if not all, has been chronicled on this blog which will also be five years old in a couple of weeks.

Starting that day, Mara and I began researching PD, reading all of the information available from the Micheal J Fox Foundation and the National Parkinson’s Disease Foundation (now merged with the Parkinson’s Disease Foundation) among many others (see the resources tab for the complete list). We have traveled the country attending research meetings and PwP meetings including the 2016 World Parkinson’s Congress and even a week for PwP’s and care partners at the Kripalu Yoga Retreat. We have met and become friends with many other PwP, adding them to our support team and providing support to them as necessary.

We created a website listing resources for PD in Tennessee after finding many PwP’s had the same experience as I did, a diagnoses and a prescription and follow up appointment. We discovered exercise was the best prescription to slow the progress of PD and I am probably in the best physical shape I’ve been in for years. We are participants in clinical trials and served as ambassadors for the Fox Trial Finder Program.

Two years ago we began the Sarasota experiment after finding a strong and supportive PD community here. After two years of renting here, we have purchased a home and are now Florida residents. Being here allows us to easily get to exercise programs designed for PwP’s AND play tennis, a new sport that I took up just 18 months ago and now play 2 – 3 times a week. We enjoy tennis so much we often take our racquets and a can of balls when we travel, never know when the opportunity to play might present itself.

So today, as I start year 6, I may have PD but I’m not sitting still or waiting for the next symptom to appear. With the support and love of my wife and care partner Mara, we continue to explore new opportunities to exercise, to support PD research and to continue to fight to slow the progression. With the support of family and friends, we explore new opportunities to expand our horizons here in Sarasota and wherever we travel.

I have read many blog posts that echo today’s message – Never Give Up! Maybe the cure isn’t here yet, but in five years I have seen several new drugs approved and there are several more almost ready for prime time. In the mean time we can delay the progression by exercising and, if possible, having a Movement Disorder Specialist as our PD doctor. They are on top of the latest research and can provide access to the latest treatments.

And now on to the next five years …

“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