• 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!

Thanksgiving

Happy Thanksgiving Holiday! 

It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

Reminder number one:  November is National Caregivers  Month.  Yes the month is about over but I know that you, like me, are  thankful for your care partner(s) every day of the year.  Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD.  Download load a copy at this link.

Reminder number two:  Tuesday the 28th is Giving Tuesday.  This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched.  For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors.  Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

Item of interest number one:  This article  Neurological disorders – including Parkinson’s – are leading source of disability globally  points out that PD is becoming pandemic and we must take action to find a cure.  This summary is worth the few minutes it will take you to read.

Item of interest number two:  The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure.  Click on the link above to get more information and join us.

Item of interest number three:  The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan.  Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC.   Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally.  Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate.  Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!

Thanksgiving

Happy Thanksgiving Holiday! 

It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

Reminder number one:  November is National Caregivers  Month.  Yes the month is about over but I know that you, like me, are  thankful for your care partner(s) every day of the year.  Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD.  Download load a copy at this link.

Reminder number two:  Tuesday the 28th is Giving Tuesday.  This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched.  For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors.  Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

Item of interest number one:  This article  Neurological disorders – including Parkinson’s – are leading source of disability globally  points out that PD is becoming pandemic and we must take action to find a cure.  This summary is worth the few minutes it will take you to read.

Item of interest number two:  The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure.  Click on the link above to get more information and join us.

Item of interest number three:  The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan.  Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC.   Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally.  Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate.  Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!

Tag: PD News

  • Thanksgiving

    Happy Thanksgiving Holiday! 

    It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

    Reminder number one:  November is National Caregivers  Month.  Yes the month is about over but I know that you, like me, are  thankful for your care partner(s) every day of the year.  Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD.  Download load a copy at this link.

    Reminder number two:  Tuesday the 28th is Giving Tuesday.  This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched.  For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors.  Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

    Item of interest number one:  This article  Neurological disorders – including Parkinson’s – are leading source of disability globally  points out that PD is becoming pandemic and we must take action to find a cure.  This summary is worth the few minutes it will take you to read.

    Item of interest number two:  The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure.  Click on the link above to get more information and join us.

    Item of interest number three:  The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan.  Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC.   Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane.  They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally.  Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate.  Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

    On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!

  • Parkinson’s Disease Southeast Symposium Coming Soon!

    Parkinson’s Disease Southeast Symposium Coming Soon!

    We are on the road to New Orleans for a wedding and the biannual 3M reunion (Mara, Marilyn and Mary Ann), but I wanted to write a quick post about the Parkinson’s Disease Southern Symposium to be held November 13th through the 16th in Spartanburg, South Carolina.

    To quote from their brochure,  “From November 13 through November 16, researchers, physicians, those living with Parkinson’s disease and caregivers are joining together to advocate awareness about the disease, its affect on the whole person, and issues related to its diagnosis, improved treatment options and better care..” You can view the entire brochure here and even more information is available on their website.

    Mara and I will be attending and we urge those of you in the Southeast to attend all or some of this event which will include a talk by Dr Michael Okun,  Director of the University of Florida Center for Movement Disorders and Neural Restoration on Friday and The Davis Phinney Foundation Victory Summit on Saturday in Greenville, SC.  The events are free but some, like the Victory Summit, require registration which you can do on the website.  Many of the events are at the Marriott hotel and they are offering a discount on rooms if booked by October 28th with no deposit required at this link. We hope to see you there!

    With a little creative travel planning for this trip, we are AT THE BEACH in Biloxi, MS where we had a nice picnic dinner with a glass of wine and a beautiful sunset.  Life is good!

  • A Hodgepodge – Part One

    Or maybe it should be a Mish Mash? how about a Mashup? Anyway, this is a post of odds and ends I have been doing or reading about since my last post. We arrived home from Florida just in time to get caught up in the snow and ice and cold a couple of weeks ago and last week and this week so we are excited to leave soon for our regularly scheduled February beach visit.  While home we have kept up the exercise on the bike, walking the few days we could, and doing Tai Chi.  I purchased the DVD recommended by the National Parkinson’s Foundation and we have really enjoyed it.  The fluid movements seem to be helping with flexibility and balance and the QiGong warmup exercises stretch a few muscles I haven’t been using much this winter 🙂

    I was excited to see the announcement last week that The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the Alzheimer’s Association (ALZ),and The W. Garfield Weston Foundation have joined together to announce a collaborative effort to stimulate analyses across the Alzheimer’s disease (AD) and Parkinson’s disease (PD) research enterprises.  This will build on recent evidence suggesting substantial overlap between AD, PD, and other neurodegenerative diseases pathologically, but also potentially biologically. They will be able to utilize two large biomarker databases, the Alzheimer’s Disease Neuroimaging Initiative (ADNI) and the Parkinson’s Progression Markers Initiative (PPMI), for new research ideas.  I hope this collaboration produces benefits for both PD and AZ current and potential patients.

    Another collaboration recently announced was the formation of the Alliance of Independent Regional Parkinson Organizations (AIRPO).  AIRPO is a  consortium of regional independent nonprofit organizations, with the shared goals of finding a cure for Parkinson’s and supporting those who live with the disease. AIRPO aims to enrich programs available to the Parkinson’s disease community by encouraging collaboration, leveraging organizational strengths and maximizing efficiency among its founding member organizations, which include: Houston Area Parkinson Society,Michigan Parkinson Foundation, Northwest Parkinson’s Foundation, Parkinson Association of the Carolinas and Parkinson Association of the Rockies. The Parkinson’s Disease Foundation offers administrative support to AIRPO.

    I belong to a ‘virtual’ support group site called Patients Like Me and one of the things they do is conduct research in connection with research groups.  Recently they started a study with the objective of being able to monitor disease progression over the phone.  I am a participant in the study and will be interested to see if it is possible.  So far I was required to fill out a survey then called an 800 number and followed the instructions to record a voice segment, quite similar to the test I received in Florida last month. More information about the study has been published here.

    I also started a genetics for beginners online course at Udacity.com.  I have received the results of my DNA test from 23andme.com and decided I needed to increase my knowledge to fully understand the results.  The course has been challenging and I just finished the quiz for lessons 1 – 4 (they didn’t say there would be a quiz!) I like the instructors and the online format has been great, they have come a long way since the last online course I took back a decade or two ago.  Interesting stuff.

    Well enough for this post, as the title suggests, there will be at least a Part Two which I hope to post before we leave for Florida on Friday so stay tuned.