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!

Tag: Clinical Trials

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

July 20, 2015
Parkinson’s Awareness Month 2015

We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.
April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease. His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today. And then he says this about awareness:

“Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.

Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”

I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other. So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:

“… if we can ease the burden, maybe we can make the road to a cure easier to walk.”

You can read Corey’s entire post here at his blog The Crooked Path .

On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park. The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations. Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge. More information about the local event can be found here. If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.

We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post. In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.

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

April 7, 2015
Partners in Parkinson’s – The Sequel
This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:
- The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
- Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
- Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.
The afternoon sessions included the breakout sessions:
- Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
- Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
- I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.
Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
March 1, 2015

What Happened to November?

Kripalu Wellness Retreat

Staying Motivated to Exercise

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Tag: Clinical Trials

What I Did During My Summer Vacation (so far)!

Parkinson’s Awareness Month 2015

Partners in Parkinson’s – The Sequel