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

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