• 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.

Time Flies

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

Time Flies

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

Time Flies

May seems to be going  has gone by awfully quickly, here it is Memorial Day June 1 and it seems like we just got home from our West Coast tour last week, not 5 weeks ago.  It’s been a busy time since we returned including Doctor appointments (annual physicals), catching up our volunteer work for Project Linus and getting ready for Spring.

Spring did finally arrive (more or less) and we took the pontoon out for the first time not long after we got home and it was great to be able to get back out on the water.
We also started getting ready for our oldest grandson Garrett’s high school graduation including adding a few hanging plants to the yard and having Mara’s son Darrin help with painting, yard work, and launching the pedal boat before our visitors arrived.  Our youngest grandchildren, Angelina and Ariana, arrived from Seattle (oh they did travel with their parents Dale and Monica) a few days before the big event.

We are very proud of Garrett – he was a varsity soccer player, a National Merit scholarship winner and a diploma candidate in the International Baccalaureate  program.   After visiting many college campuses over the last couple of years he has decided to join his sister Breanna and attend Rhodes College in Memphis where he will  also play soccer for the Lynx.

We had a great time with our visitors.   In addition to attending the graduation and subsequent festivities, we all spent a day at Dollywood, Dolly Parton’s amusement park in Pigeon Forge, near Smoky Mountains National Park.  The weather wasn’t perfect but we didn’t let the rain dampen our spirits and a good time was had by all.

We had a day of great weather for being on the lake and doing some tubing and some fishing.  They left before Memorial Day and we spent a quiet (and wet) holiday weekend getting in our walks and catching up on a few to-dos including finishing my Introduction to Genetics course.  I really enjoyed the course, my first online learning experience and I would recommend it if you have an interest in genetics.

Next up, my daughter Holly and grandchildren Charlie and Kayla arrive from Colorado Springs on Tuesday and I expect more tubing, fishing and maybe another trip to Dollywood will occur during their visit.

On the Parkinson’s front, I am still working thinking about adding a page with a list of the blogs I follow but in the meantime here is a list of Parkinson’s Disease blogs posted on The Bachmann-Strauss Dystonia and Parkinson Foundation website.  I am honored to be on their list which also includes many of the blogs that I follow and has pointed me to some new ones to add to my list.

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