• 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.

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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