• Busy September

    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

     

     

     

     

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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