• Latest Research News

    Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

    What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

    Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

    So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

    And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

    In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

    And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

    As always,thanks for reading.

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

     

     

     

     

     

     

  • I Am Still Here!

    I think I may have set a new record for days (months!) between posts!  It’s been over 75 days since my last post on March 25th.  I’m happy to report that the long delay was not due to health problems, well maybe a bit of apathy, one of those non motor symptoms PwP’s sometimes suffer, but to a busy schedule. 

    Here’s a quick summary:

    March – closed on new house, start moving.

    April – Son Dale, daughter-in-law Monica and Granddaughters Angeline and Ariana arrive, they helped us finish the move from the townhouse to the new house, what a lucky coincidence, they were a great help.

    April – home in Tennessee is FINALLY  back on the market, just 7 months after the flood.

    April – we attended the PD Expo in Sarasota and performed with the PD in Motion dance group.

    April  – Son Darrin arrives, again a great help, he painted two walls and some furniture for us.

    April – short trip to Orlando to meet up with fellow PwP Ted and his wife Jan, enjoyed a nice day in Epcot.

    April  – after much negotiation, we accept offer on Tennessee home.

    May – inspection of Tennessee home reveals more problems and we start another agonizing negotiation.

    May  – finally agree to reduce price of Tennessee home to facilitate the sale and get it over with.

    May – in  Memphis for Grandson Garrett’s graduation from Rhodes College.  He graduated Summa Cum Laude and will attend Wake Forest Medical School next.

    May  – painted the great room in new house in anticipation of some new furniture delivered on the 23rd.

    May – left Sarasota for Colorado, Arizona and California to attend graduations and visit friends.

    May – closed on sale of Tennessee home!

    May – Attended Grandson Charlie’s high school graduation, what a delightful ceremony. I have never seen him happier than he was on graduation day!

    May – visited with friends and relatives in the Denver area.

    June – Arrived in Aspen to visit friends and we got them excited about playing tennis – it is interesting to play at 8100 feet above sea level!

    June – Arrived in Sierra Vista, AZ to visit friends

    Coming up June 9th – off to San Diego to visit son Ryan, daughter in law Sarah and Grandson Julian who will also be graduating high school next week.

    You may have noticed that there is no mention of a trip to NYC for the Parkinson’s Unity Walk in April.  With all of the problems with the Tennessee house along with the move into the new house and the upcoming travel, I decided to lower my stress level a bit and opted out of the Patient Advocacy Group.

    And of course, we continued to keep up our exercise routine as much as possible, playing tennis 2 -3 times a week and cycling twice a week along with the PD in Motion class.   So there you have it, all the excuses I could think of for why I haven’t posted in the last 75 days or so.  By the way, this delay does not set the record for not posting, that dubious record was set last year when I went 126 days between April and August.

    About two months ago, I felt that my medication was wearing off about 30 – 45 minutes before the next dose.  I tried a one week experiment increasing my Sinemet to 2 pills 4 times per day which eliminated the problem for the most part.  So I emailed my Doctor in Nashville (no, I haven’t changed to a local doctor yet) who agreed to the change.  So it’s been almost five years with only two changes to my medication and I firmly believe continuing to exercise  is the key.  In fact, we are traveling with our tennis rackets and have played tennis almost everyday on this trip.  Our tennis coach in Sarasota had recommended we purchase new rackets that would fit our grip and our game so this has been a good opportunity to play with the new rackets and get comfortable with them before we return to Sarasota on June 18th.

    That brings things up to date for now,  I will start working on my next post soon where I want cover some of the latest news about Parkinson’s Disease research.  The plan is to publish that post in the next two weeks.  I hope that setting a goal will make it happen!

    One last note – It Is What It Is was recently named one of 10 Parkinson’s Blogs to Keep you Fit and Positive by EverydayHealth.com.  I am honored to be included on this list with several of the bloggers that I already follow and some new ones that I will be adding to my list.

    Thanks for reading.

     “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • The Saga Continues!

    Wow what an interesting month.   Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market.  When we arrived at the home, we discovered it was a long way from completion!  To say we were disappointed would be an understatement for sure.   The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done.  This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

    After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through  on Monday the 26th!) What a long and winding road!

    In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price.  We put in an offer which was accepted and we are set to close March 30th!  The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches.  Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move.  Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks. 

    With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis.  Mara is playing tennis almost every day while I play at least three times a week.   Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval.   We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays. 

    April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month.  There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class.  I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

    I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the  Unity Walk in Central Park on April 26th.  For more information about the Unity Walk and how you can support us, click here

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