• Nine Years

    Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

    My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

    We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

    It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

    By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

    Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

    Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

    So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

    And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!

  • Today is Parkinson’s Awareness Day!

    The new symbol for PD Awareness is The Spark. Developed by a collaboration of organizations in over 80 countries, The Spark will mobilize our community and Spark change!

    “This World Parkinson’s Day, we’re calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. We can break the stigma around our disease, lead the call to fund medical breakthroughs and together we can put Parkinson’s in the past.”

    PD Avengers website 4 -11-2022

    Click here to read more about The Spark on the PD Avengers website and view the actions being taken to grow Parkinson’s Awareness.

    Also in support of PD Awareness Parkinson’s Life, the newsletter of the European PD Association, is Busting Parkinson’s disease myths with a new infographic to call attention to just four of the misconceptions people have about Parkinson’s Disease.

    As pointed out in the book “Ending Parkinson’s”, PD is epidemic and growing faster every year.

    There is currently no cure for Parkinson’s Disease. Research must be funded to find a cure.

    Parkinson’s can happen at any age – support research to find a cure!

    This myth needs to be busted!! Tremor is one of the more visible symptoms of PD but not all of us have tremor. Instead we deal with stiffness, uneven gait, and balance issues and more, plus a multitude of non motor symptoms such as sleep issues, fatigue, pain, constipation, drooling, soft voice and tiny handwriting.

    If you haven’t joined PD Avengers, please click here and add your name to the cause. You don’t have to be a PwP to join and your support will help SPARK awareness of Parkinson’ s disease!

  • It’s Giving Tuesday!

    A quick reminder that tomorrow is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause. Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities. It is a great opportunity to make a difference.

IT IS WHAT IT IS!

The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
 
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
 
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
 
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
 
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
 
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
 
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
 
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius

Other Posts

IT IS WHAT IT IS!

The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
 
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
 
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
 
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
 
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
 
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
 
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
 
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius

Other Posts

Year: 2015

  • The Busy Month of May

    The Busy Month of May

    Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
     
    First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
     
    The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
     
    It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
     
    We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
     
    We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
     
    Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
     
    And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius

  • It’s Clinical Trial Awareness Week

    Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met.  Amazing how life changes isn’t it?

    Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder.  But then what?  You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure!  But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug.  Oh and that is the same problem with your second choice too!

    Oh look, a soap box….

    I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants.  Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug.  Presto, no longer eligible for many trials, at least while in the early progression of PD.

    I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs.  But, what if the combination produces a better result?  Already many of us take two or more drugs  to treat all of our symptoms and improve our quality of life.  So here’s my idea..

    Why not include some already medicated volunteers in the study design?  For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex?  It might require some tweaking of the dosage of the drugs but you have another 100 participants  in your trial.  Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.

     …..OK, off the soapbox.

     
    Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
     
    As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
     “It does not matter how slowly you go as long as you do not stop.” – Confucius

     

     
     
  • Walking for Parkinson’s Research

    Walking for Parkinson’s Research

    Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN.  The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!

    We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.

    We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.

     
    This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.
     
    Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist.  I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .
     
    I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius

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