• 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!

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!

Other Posts

IT IS WHAT IT IS!

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!

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Tag: Travel

  • 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!

  • On The Road…Again!

    Mara and I attended the Partners in Parkinson’s event in Atlanta recently, along with an estimated 650+ other patients with Parkinson’s and their loved ones.  We were also honored to serve as panelists during one of the breakout sessions.
     
    Our day started with meeting a couple from Knoxville as we walked to the convention center. We introduced ourselves and agreed to stay in contact since they had not yet found a support group.  After getting registered, we enjoyed the complimentary breakfast with a couple from Atlanta and soon selected a table to sit at for the morning presentation, joining a father and daughter from the area.  We had already added six people to our support group and the day was young!
     
    Three main topics were covered in the morning moderated by longtime journalist Dave Iverson, a Parkinson’s patient himself, who serves as contributing editor for the The Michael J. Fox Foundation.  Each topic was followed by Q & A from the audience. The first topic was The Many Faces of Parkinson’s Disease.  Dave questioned three Parkinson’s patients about their diagnoses and the path their lives have taken since, reinforcing the fact that this disease impacts everyone differently. As Dave said “If you have seen one person with Parkinson’s, you have seen one person with Parkinson’s.”
     
    Next up was Seeing a Movement Disorder Specialist: What to Know, Ask and Expect.  A Movement Disorder Specialist MDS is a neurologist who has received additional training in PD and other disorders. One of the cool things you can find on the Partners in Parkinson’s website is a searchable database to help you find a movement disorder specialist near you.

    Dr. Stewart Factor, Director of the Emory University Movement Disorder Clinic, conducted an “appointment”  with a PD patient and his wife.  It was an interesting, informative session prompting many of us to realize that our initial consultation may not have been filled with as much information about PD that he was covering.

    The final topic was Parkinson’s Research: The Road Ahead where Dave questioned three experts involved in clinical trials and PD research.  This was an informative session that engendered many questions from the audience including when to start levodopa, diet, new drugs in the pipeline, clinical trials and others.
     
    After lunch, the breakout sessions were offered twice so you  could attend two different sessions.  The sessions were Living Well with Parkinson’s, presented by The Davis Phinney Foundation; I’m Still Wondering About…, an opportunity to ask additional questions; and Building Connections with Family, Friends and Community, the one we participated in.You could also browse the Resource Fair where over 20 local organizations and care providers offered information for PD patients.Since we were involved in both of our sessions, we couldn’t attend any of the others but I did hear a lot of positive response about The Davis Phinney presentation.
     
    Our panel included Bill Wilkins, diagnosed 8 years ago and very active in the Parkinson’s community through his organization, The Wilkins Parkinson’s Foundation,  and India Pender Martin, whose grandfather was diagnosed when she was three and who is also active in the Parkinson’s community.  Our panel was expertly moderated by Claire Meunier, vice president of  research engagement for the Fox Foundation.
     
    Mara and I discussed the path we have been following since my diagnosis, how we communicate with family and friends, our trip to Kripalu and why I started the blog.  Bill discussed his diagnosis and how he became active in the Atlanta community and across the US.  India talked about dealing with her grandfather’s Parkinson’s symptoms at an early age and her desire to find a cure.  Then we took questions from the audience.  We received positive comments from attendee’s after each session, and I handed out quite a few cards with the blog address — so might pick up a few more readers!
     
    We are glad we accepted the invitation to participate on this panel even though neither of us are fans of public speaking. It became easier for me when Bill said, “I can meet a person with PD and immediately strike up a conversation.” Which is true for us too. We added many new friends to our support group. Partners in Parkinson’s allowed us  the opportunity to “strike up a conversation” with fellow people living with Parkinson’s.
     
    At the closing session Dave interviewed Mahlon R. DeLong MD, who just received the Lasker Award for research that led to Deep Brain Stimulation (DBS).  They talked about what’s next and the possibility of using DBS to help with balance and gait issues that aren’t solved with the current procedure.  I am excited about that since those are my worst motor symptoms.
     
    So that’s what happens at a Partners in Parkinson’s event and if one is being held near you we both recommend attending, you can find the schedule for the remaining events here.
     
    Next…we are in Northern Michigan to celebrate Mara’s  brother’s 70th birthday.   Our timing is right and we will attend the Grand Challenges in Parkinson’s Disease conference held in Grand Rapids where we will meet up with a couple we met at Kripalu.
     
    Whew this was a long post, thanks for sticking it out to the end and stay tuned for the next post.
  • At the Beach — Again!

    At the Beach — Again!

     

    I am writing this from the deck of a beautiful home overlooking the Atlantic Ocean on Bald Head Island, NC.  Yep, at the beach again!!  More about how we got here later in this post.

    I have looked at several more clinical trials but again find that I don’t qualify because I am already on medication.  It seems to me that communication between Movement Disorder Specialists (MDS) or Neurologists and clinical trial operators could increase trial participants.  If the Doctors were aware of the trials being conducted nearby, they could then offer their newly diagnosed patients the opportunity to particpate in the trial before they prescribed a medications.  Of course another issue is travel, most of the trials that I have tried to join are at least 200 miles away and the travel costs are usually not covered.  In her latest blog post, Soania Mathur MD states “…close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject.”  The post goes on to discuss both the logistical and the lack of knowledge issues I have discussed above.  The Michael J Fox Trial Finder website does a great job of listing all of the trials in my home radius of 300 miles and they notify me if a new one is added that meets the criteria but the newly diagnosed need to know where to look.  Perhaps one or more of the National organizations can develop a simple brochure that can be supplied to MDS and Neurologists for them to hand out or make available to patients.  It might be a start?

    I was asked this week to be a PatientsLikeMe Research Ambassador.  PatientsLikeMe is an online support group I belong to and I had applied to be a member of a research advisory committee they were forming.  While I wasn’t selected for the advisory group I was asked to be a Research Ambassador. Per the email ..”Like the Team of Advisors, our Research Ambassadors are being asked to commit to a program that’s designed to put you in the driver’s seat of making research better.”  As an Ambassador, I will get special communications each month for the rest of the year about new research initiatives, information about data being collected and how it will be used, and use my blog and other social avenues to share this information with the Parkinson’s community.  I have participated in a couple of their research projects already, including the one where I did the voice test over the phone to see if they can track the progress of my Parkinson’s. Sounds interesting and I am looking forward to participating.

     

    We had a great visit with my daughter Holly and grandchildren Charlie and Kayla.  The weather was great until the last evening so we got in a lot of boating, tubing, swimming, fishing and stand up paddle boarding along with side trips to the Ripley’s Believe It or Not museum and a couple of rounds of mini golf.

    Kayla turned out to be the fisherperson extraordinaire hooking a couple of nice catfish and a bunch of sunfish from the dock.  Charlie loved being on the water and riding the tube. Holly and Kayla both enjoyed stand up paddle boarding so much the first time, they went back for more before leaving for home.  It was a great visit and a good time was had by all.

    We are enjoying our time at the beach in Bald Head Island.  The island is reachable by ferry from Southport, NC and once you are here, you travel by foot, bike or golf cart.  We have been lucky to spend a week here for the past several summers with my stepson David and his wife Shelly and the two grand kids Breanna and Garrett.  This year Breanna is in MN so this is the first time we have been here without her.  Garrett always brings along a friend or two, this year he brought along 4 high school buddies and they are having a blast.  Dave and Shelly’s friends Mario and Missy have also joined us for the week.  It is a great place to just relax, read books, take long walks on the beach and watch the World Cup.  I am trying to catch up with all of the magazines I haven’t read since we returned from Florida in early March and produce this blog post.  Looks like the blog post will make it, we’ll see about the magazines.

    Our friends Mary Ann and Don live nearby in Wilmington, NC so they came over for a day and we had a great time, we hadn’t seen them for almost 2 years so we had a lot of catching up to do.  We enjoyed a nice lunch with them and a couple of ‘slow’ rides around the island as one of our golf carts is not super speedy. 🙂

    Next up is a visit from my son Ryan and his wife Sarah and grandson Julian and his half brother Trysten for the Fourth of July, look for more fun on the lake in the next post.

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