• 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!

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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