• 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!

  • A Month of Change

    September has been a month of changes including:

    • We moved from Tennessee to Florida
    • Our house in Tennessee suffered a catastrophic flood due to a broken pipe
    • Hurricane Irma also moved to Florida
    • I moved this blog to a new host and a new platform and
    • Summer left and Fall arrived

    We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners.  We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again.  Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

    So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day.  We found the house to be almost a complete remodel with water damage through out both floors.  We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company.  I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

    While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available.  Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

    Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too.  As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

    Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress).   As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist.  I will keep at it and all should be functional soon.

    In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address.  I think this was a one time event and future emails will only be sent when I have a new post.  If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed.  Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

    And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow.  Sounds OK to me!

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

     

     

     

  • The Sarasota Experiment Results Are In!

    As I noted in the previous post, it had been over four months since I posted anything at all and a busy four months they were.  In April we decided the Sarasota experiment was a success and that we should sell our Tennessee home and move to Sarasota full time.  In Sarasota I am able to pedal for Parkinson’s twice a week, play tennis two to three times a week, attend a Dance for PD class once a week along with yoga, tai chi and general exercise classes.  And I don’t have to travel 45 minutes to attend any class, everything is within a 10 – 15 minute drive which makes it easy to ‘get up and go’ exercise. So I have updated the cover photo to a great beach sunset with two dolphins enjoying the view and made some modifications to my profile over there on the right.

    More and more studies are showing that exercise is one of the keys to living with PD (or just living in general).  While it seems like I am taking on more that I should, I find instead that the more I take on, the better I am able to deal with my PD symptoms.  This has certainly proved out during the 3 months we have been in Tennessee, my exercise routine dropped to almost nothing and I can tell my symptoms are worse.

    So we finished April in Sarasota with a visit from our friends Tom and Marilyn.  We enjoyed sunsets on the beach, nice walks in the complex where we live, touring the Ringling estate and Selby Gardens and kayaking through the mangrove tunnels near Lido Key.

    In early May we returned to Tennessee and started the process of getting the house and grounds ready to sell.  We also had a visit from my brother-in-law Mike and my sister Marcia and we took a trip to the Grand Ole Opry in Nashville, a bear sighting trip through Cades Cove in the Smokies (yep we saw some bears) and a lot of fishing!

    In June we worked on the home and squeezed in a trip to Bald Head Island with Dave and Shelley and Breanna and Garrett.  By the middle of June we were ready to put the house on the market and we listed it on a Friday and sold it on Monday, just before the first of the summer visitors arrived! At the end of the month, Dale Monica and Angelina and Ariana arrived to celebrate the fourth of July, a birthday or two and the sale of our house.  And on July 4th Ryan Sarah Julian and Trysten arrived to  celebrate the holiday and spend some time on the lake.
    After the first round of visitors left, Holly, Paul, Charlie and Kayla arrived for a visit at the end of July and we enjoyed the lake and took a trip up to Gatlinburg for lunch and mini golf.

    We had a great time with everyone and are glad everybody got a final visit to the Lake Cottage. At the end of the month Mara and I went to Townsend to celebrate our 27th wedding anniversary and my 71st birthday.  It was a great 3 days of R and R after a hectic couple of months getting ready for the house sale and visitors.

    Since the Townsend trip we have been packing and deciding what to sell and what to keep.  This weekend we will hold an estate sale and the house will be empty.  We will stay until the 22nd since we are on the direct path for the full eclipse on the 21st.  Then we will make a quick trip to West Virginia to visit granddaughter Breanna before returning to Sarasota by the 1st of September.

    July 24th marked the 4 years since being diagnosed with PD and I do believe that I was doing better while maintaining my Sarasota exercise routine and I am looking forward to gearing back up to see if I notice a difference.  I visited my PD doctor last week and he was pleased with my overall condition and he recommended no change in medication levels, just continue to exercise.

    August 6th also marked 4 years publishing this blog and, once again I could make my usual promise that I will do better and post more. But since all that does is set high expectations for you and feelings of impending doom for me, I’m going with no promise this year.  After all It Is What It Is!

    Speaking of exercise, last week the NPR show The Peoples Pharmacy aired a show about Pedaling for Parkinson’s and the advantages of exercise in general.  The show includes an interview with Kathy Helmuth, who is the instructor of our Pedaling class in Sarasota along with interviews with Dr. Jay Alberts who discovered the benefits of “forced exercise” for PD patients and Dr.Jordan Metzel who discusses the benefits of exercise for us all.  You can download or listen to the podcast here.

    So that is a condensed version of pretty much all that has been happening for the last four months.  Next time I will be posting from Sarasota and, hopefully, talking about changes we have seen since getting back into a regular exercise routine.  Until then, thanks for reading and for sticking around during my 4 month hiatus.

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

     

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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

 

Our Sarasota Experiment – Part Two

One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern.  We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week.  In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!

While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due.  So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.

We have  really enjoyed playing tennis.  I had never played before we took lessons in December and was surprised at how much I enjoy it.  We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half.  We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up.  I’m sure we will be on the ATP tour soon!

We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more.  At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.

Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota.  Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.

And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers.  Thank you!

 

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