• Cognitive Training and ….Cinnamon?

    I started ‘brain training’ with Lumosity last fall and usually play five games a day whenever possible.  If you aren’t familiar with Lumosity, they provide cognitive training exercises that teach neuroplasticity, that is training the brain to use new pathways to complete a task.  Cognitive training has blossomed in the past few years and since some of my neural pathways are deteriorating, I thought Lumosity would be an interesting test and might help me build those new paths.

    The Lumosity training works to improve five areas – memory, flexibility, problem solving, attention and speed – all improvements I can use!  After every five game session you get an overall score called  the Lumosity Performance Index or LPI which is an average of the five areas and hopefully goes up each day (I wish).  But enough of the background, if you want more info, check out their website.

    I have found that playing the brain games with PD can be a challenge, particularly the flexibility and speed games that usually require the use of the arrow keys on my laptop to select the right answer.  I have noticed that I can visualize the correct move but making my fingers press the right key is another thing altogether.  As I learned from the presentation by Kaitlyn Roland at the Kripalu session, one of the problems with a lack of dopamine is the brain sends the correct command but it gets scrambled and doesn’t follow the correct pathway which results in the wrong action being taken which can result in a fall, freezing in place or, it appears, pressing the wrong key.

    So I am hopeful that by doing the games every day I am creating those new neural pathways and my LPI score will  reflect the improvement.  But sometimes I seem to be stuck with the old paths and my LPI chart ends up looking like this one for the last four weeks, up and down.  Such is life with Parkinson’s 🙂

    The big Parkinson’s news of the last couple of weeks is the publication of a study that cinnamon might stop the progression of Parkinson’s Disease!  I figure this means I should be baking and consuming my famous (in some circles) Gram’s Pecan Rolls so named because the recipe is from my daughter in law Monica’s Gram and it is full of cinnamon.  Of course the study was conducted on mice so I don’t know how many rolls I need to eat daily but do know what the effect would be on my weight!  Guess I’ll wait for more information before getting the baking equipment out but I wonder if my LPI would go up? Sounds like a clinical study in the making!

    We had a great 4th of July visit with son Ryan and his wife Sarah and their son Julian and his half brother Trysten.  In addition, grandson Jake and granddaughter McKenna and her friend Katie also joined us for the  holiday weekend so we had a houseful.  The kids enjoyed tubing on the lake and swimming off the dock, and we all enjoyed taking the boat down to watch the fireworks go off over the lake.  We even managed to load the tube with all five kids for some fun on the lake.  Again some fishing and paddle boarding took place along with watching the World Cup games.

    Next week it will be one year since my PD diagnosis and a lot has happened in the space of the year, most of which I have managed to chronicle in this blog.   Once again I thank you all for sticking with me on this journey, your support means  a lot to me.

    BTW, if you are a tweeter, follow me on twitter by clicking on the link on the right below my profile.

  • 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.

  • 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.

Eight years…

..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

Eight years…

..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

Tag: Parkinson’s Disease

  • Eight years…

    ..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

    Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

    I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

    Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

    I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

  • The Saga Continues!

    Wow what an interesting month.   Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market.  When we arrived at the home, we discovered it was a long way from completion!  To say we were disappointed would be an understatement for sure.   The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done.  This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

    After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through  on Monday the 26th!) What a long and winding road!

    In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price.  We put in an offer which was accepted and we are set to close March 30th!  The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches.  Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move.  Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks. 

    With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis.  Mara is playing tennis almost every day while I play at least three times a week.   Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval.   We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays. 

    April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month.  There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class.  I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

    I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the  Unity Walk in Central Park on April 26th.  For more information about the Unity Walk and how you can support us, click here

  • Sarasota Happenings

    We have been busy with exercise, visitors and events since returning from Knoxville after Thanksgiving. 

    Right after we returned, our friends Pat and Steve from Colorado arrived for a visit which included a trip to Walt Disney World where we met up with our mutual friends Ted, who also has Parkinson’s, and his wife Jan.  We spent two nice days at Epcot and the Magic Kingdom with light crowds so we actually got to ride the 7 Dwarfs Mine Train with only a 25 minute wait!  (That’s all six of us zipping down the hill) And we got a lot of exercise walking around the parks.

    We finished the visit up with our first trip to the Dali museum in St. Petersburg.   It contains the largest collection of his works outside of Spain, all donated by a couple who started collecting his work in 1940’s.  It was interesting to see his painting style change to surrealism as his career progressed.

     

    This week we also attended Cause 4 Fashion, a lunch and fashion show to benefit the Neuro Challenge Foundation for Parkinson’s.  All of the models were either Parkinson’s patients or care persons and our friend Carolina was ‘on the runway’ again this year.  It was a well attended event and for a great cause.  Neuro Challenge sponsors over 30 monthly education and support programs in four Florida counties including our PD in Motion class and all at no charge.

    As always, we try to exercise at least 5 days a week. We attend  the PD in Motion dance class every week and play tennis at least 3 times a week.  I attend Pedaling for Parkinson’s at the YMCA and Mara does her weight training routine twice a week.   Kathy, our pedaling instructor, continues to push our class with new routines which keeps it interesting.  I am amazed at the improvement in my aerobic base since we returned in September.   I continue to see a reduction in symptoms for up to 24 hours after each class.  If you have a class near you I highly recommend adding it to your exercise routine.

    As you have probably noticed, I continue to play around with the format of the new site along with trying to find all of the broken links and missing photos.  This week I also updated the Resources page to reflect the merger of Parkinson’s Disease Foundation (PDF) and the National Parkinson’s Foundation (NPF) in to Parkinson’s Foundation. I  added a new resource website about hallucinations and delusions caused by PD.  The site is called more to parkinson’s  and is sponsored by Acadia Pharmaceuticals.   

    In case I don’t produce another post this year, I will take this opportunity to wish everyone a Happy Holidays!!  We hope 2018 will be a year of Peace, Joy, Good Health and Good will for us all. 

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