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!

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

Category: Friends

Welcome Summer!

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

June 23, 2019
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

August 7, 2018
Oracle TEAM USA Wins the America’s Cup!

In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay. In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.

I feel the same way about dealing with Parkinson’s, you need a team to make you great. The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.

But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed. I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.

I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.

This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water. A grand time was had by all.

One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.

September 25, 2013

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

Category: Friends

Welcome Summer!

Me, a Tennis Hero?

Oracle TEAM USA Wins the America’s Cup!