• 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

     

IT IS WHAT IT IS!

Brrrr, It’s Cold!

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
 
I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
 
It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
  • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
  • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
  • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
  • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
  • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
    Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
  • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
    patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
 I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
 
 
Happy New Year!
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius
 
 

Other Posts

IT IS WHAT IT IS!

Brrrr, It’s Cold!

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
 
I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
 
It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
  • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
  • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
  • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
  • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
  • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
    Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
  • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
    patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
 I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
 
 
Happy New Year!
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius
 
 

Other Posts

Year: 2015

  • Brrrr, It’s Cold!

    Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
     
    I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
     
    It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
    • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
    • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
    • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
    • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
    • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
      Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
    • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
      patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
     I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
     
     
    Happy New Year!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
     
     

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