• 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.

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

“The Team”

I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.