• What Happened to November?

    Wow, here it is December already.  What happened to the month of November?  It seems to have just flown by along with my good intentions to post at least every 2 -3 weeks.  Ah well, you know apathy is another symptom of Parkinson’s 🙂   I started working on a post a couple of weeks ago planning to expand on my last post about the Kripalu Retreat experience but then I discovered that one of the other attendees was working on a similar project and I happily received permission to link to her post instead of reinventing the wheel as we used to say back in the day’s before retirement. So I invite you to follow Barbara’s Ramblings!  Barb has done a great job of summarizing the opening session and the PD101 session with Dr. Houghton and she has laid out the other topics which she plans to also summarize as time permits. Thanks Barb!  (Update 10/1/2017 – Barb’s Blog is no longer being maintained so links removed)

    One thing we have been continuing since the Retreat is listening to Divine Sleep Yoga Nidra, a guided meditation CD from Jennifer Reis, one of the instructors at Kripalu.  We play it almost every night and have found it to promote deep relaxation and sound sleep.

    This month I purchased an indoor bike trainer so I can bike inside this winter.  Bicycling has been shown to be beneficial for PWP so I plan on biking at least 3 days a week.   I haven’t been on a bike in probably 5 years so I have already discovered that my rear end and the seat need to get reacquainted! We are still walking when the weather permits and we dropped our time to 35 minutes recently which is close to where it was last year.

    Speaking of exercise, it’s time to sign up for the 2014 Mary-thon. I mentioned this event in a previous post.  This is a great way to stay motivated to exercise.  You pledge to exercise 30 minutes 5 days a week for 26 weeks.  Running is not required, any form of exercise will do and this year you get a pedometer, access to Hannah’s Gym and weekly emails with your registration and $10 goes to the Project Linus organization which provides blankets to kids in traumatic situations.   Go to www.mary-thon.net for more information and to sign up.

    This month brings my first Physical Therapy appointment, a visit to the Neurologist and, of course, the Christmas Holidays. I plan on another post before the holidays, but just in case we wish you all a Happy and Joyous Holiday Season!

  • Kripalu Wellness Retreat

     
    We have returned from a most informative and relaxing week at the Kripalu Center for Yoga and Heath. The Healthy Living Immersion Program conducted in conjunction with the National Parkinson Foundation was absolutely amazing.

     

    This wellness retreat for recently diagnosed PWP’s and their caregivers included sessions with a leading Movement Disorder Specialist, along with sessions about exercise, relationships, nutrition, and resilience led by experts in the field.  And we had various yoga, yoga dance and meditation sessions in addition to the yoga offered daily at Kripalu.  Oh and did I mention the food? We enjoyed wonderful healthy meals every day in the cafeteria all made from organic and local foods.

     

    I will go into more detail in the next post, but first what is Kripalu?  Seems like a simple question but I don’t think you can fully understand the Kripalu experience until you spend some time there.   Here is part of the description from the Kripalu website:
    Kripalu Center for Yoga & Health is a nonprofit educational organization dedicated to empowering people and communities to realize their full potential through the transformative wisdom and practice of yoga. For more than 30 years, Kripalu (kri-PAH-loo) has been teaching skills for optimal living through education for the whole person: body, mind, and spirit. (Emphasis added) It is the largest and most established retreat center for yoga, health, and holistic living in North America.

    While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…”  As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat.
    One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s.  There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with.  We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.

    Without a doubt this was the best gift we could have given ourselves at this time in our lives.  I can’t say enough good things about our experience but I’ll try in the next post 🙂

  • Staying Motivated to Exercise

    Here we are showing off our medals (and our Beat Parkinson’s TShirts) from this year’s Mary-thon.  What is a Mary-thon you might ask? The Mary-thon is a 26 week exercise program developed by Mary Balagna, vice president of the National ProjectLinus organization.

    The idea of the Mary-thon is you commit to exercise at least 30 minutes 5 days a week for 26 weeks.  You don’t have to run or walk for 30 minutes you just need to complete 30 minutes of exercise.

    We like to get out and walk for our exercise and I keep track of our time on a simple spreadsheet showing our time for the days of the week for 26 weeks.  Since we usually walk the same path through the park next door, when my times started getting slower this year, it was yet another indicator that something was amiss. On the plus side the times have been going down since I started  the medication which indicates it is helping reduce the rigidity and slowness.

    Mara and I both volunteer for the local Project Linus Chapter. Project Linus is a volunteer organization with chapters across the US that give handmade blankets and afghans to children who are seriously ill or otherwise traumatized. When you sign up for the Mary-thon, a portion of your registration fee goes to Project Linus. In addition you get a work book with all types of exercise routines that will meet the 30 minute time frame and fit your ability level. Mary sends weekly emails with encouraging words to help keep you on track and if  you complete the Mary-thon you receive a medal. .

    Many studies have been completed that show that exercise is essential for People with Parkinson’s (PwP), in fact last week at the Third World Parkinson’s Congress  held in Montreal, Canada one of the bloggers in attendance said that many of the sessions mention exercise as essential to optimizing daily life with Parkinson’s.  But getting motivated to exercise regularly is not easy even if you don’t have Parkinson’s so consider joining next years Mary-thon.  

    Of course 26 weeks is only half the year so you can sign up for the Ultra Mary-thon and do another 26 weeks to finish out the year.  If you are looking for an exercise program which is specifically designed for PwP, check out the new program available from the Davis Phinney Foundation.  The program includes a free DVD with PwP particpants showing you how to do the exercises.  A booklet is also available with the exercise information in written form.  You can request a free DVD at the Davis Phinney Foundation website by clicking here.  We have been trying to do the stretching exercises most mornings and both of us have noticed some improvement in flexibility especially our necks. I look forward to trying the exercises when we are unable to get out for out daily walk.

    We just returned from two nice days at our favorite Smokey Mountain destination, The Dancing Bear Lodge in Townsend, TN.  The plan was to visit the Great Smokey National Park, but congress apparently thought it would be better to shut down the government, including clinical trials, instead. But we had a great relaxing time and two wonderful meals at the lodge.  Next weekend we head up to the retreat at Kripalu Resort in Massachusetts followed by a chance to meet with some friends from New Hampshire.  Should be a great experience!

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

 

 

 

 

 

 

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

 

 

 

 

 

 

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