• Welcome 2021!!

    Happy New Year!!  I don’t know about you but I have never been so happy to leave a year behind.  It has been a year of trials and tribulations and wrinkled hands from so much washing.  We have averaged  5 – 7 books per week since March, lived through almost 3 months with no tennis and discovered Zoom can be used for just about everything from exercise classes to family gatherings.  

    We have survived not eating out unless we can eat outside, wearing a mask everywhere you go, and not hugging.  We go nowhere except to the grocery store and the tennis court which has reduced gasoline use and carbon in the air.  

    I could go on and on about what we will not miss about 2020 but we did learn some lesson from 2020. I received this list from a good friend and reader of this blog  and I thought I would pass it along to you all.  

    It has been about 5 months since  my last post but with the COVID-19 restrictions there is very little news to report.   As noted above, we have been playing tennis with a small group (our pod) and the ever resourceful Pedaling for PD instructor Kathy has been teaching classes 3 days a week via Zoom.  I purchased a spin bike for home in order to keep up with the exercise as much a possible.

    I finally had a face to face visit with my neurologist in October which went well with no changes to medications or routines.  I also met with a speech pathologist and we decided the Speak Out! program would be beneficial as my voice has been getting softer and softer requiring me to repeat myself often.

    Speak Out! is a program where you meet one on one  with the speech pathologists three times  a week for four weeks  and learn to speak with intent!  The sessions were very focused on improving the volume of my voice using breathing exercises, visualising projecting my voice and practicing going from low to high and back while saying ahhhh.  In addition to the voice exercises, they also have cognitive drills for each lesson and a reading aloud exercise.  I found the program to be very beneficial and I have continued to work at speaking with intent everyday. 

    We spent the holidays at home with no family visitors for the first time that we can remember.  Hopefully next year we can return to normal as the vaccine is rolled out.

    Speaking of the vaccine, through a combination of serendipitous events, Mara and I received the first Moderna shot last week and are scheduled for the second shot in early February.  Sarasota county opened appointments for persons 65 and over using an online reservation system.  Because I had signed up for text messages from the county back in March, I received a text message that they were taking appointments and was able to schedule both of us before they were filled up.  The process worked very smoothly when we arrived at the County Health Department.  While there was a long line, it turned out they were people without an appointment hoping to get the vaccine  by waiting. 

    Since we had an appointment, we went to the head of the line and were in and out in approximately an hour including a 15 – 20 minute observation period after the shot.  So far we have had no major complications beyond some pain at the injection site.  I will update you when we get the second shot as I have heard that is when they expect more minor complications will occur since your body has been making antibodies to fight the virus.

    A reminder – if you haven’t already joined PD Avengers, please click here and add your name to the list of supporters.  We are hoping for 1 million supporters by 2022 and together we are fighting to END PARKINSON’S!

    I hope this post finds you healthy and not totally bored out of your mind.  Please mask up, practice social distancing and stay safe! 

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

     

      

     

  • Join PD Avengers & Let’s End PD!

    Last  month  marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist.   During the past 7 years  I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD,  and moved to Florida.

    Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD.  A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive.  The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming  pandemic and action needs to be taken to end PD. You can read my blog post about the book here.

    Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat)  a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s.  They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s.  I have added my voice and have become a PD Avenger and I hope you will too!  You can find out more information and add your voice at PDAdvengers.com.  Together we can END PARKINSON’S!!

  • Sample Posts #4

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    Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.

Pedaling with Parkinson’s

As part of our stay here in Florida, we became temporary members at a local Gym that provides PwP specific classes along with all the other amenities of a large gym.  One of the classes they offer is Pedaling with Parkinson’s, a twice a week spin class specificly designed for PwP’s.  The objective of the session is to cycle for 40 minutes, keeping your heart rate between 60% – 80% of your MHR (maximum heart rate), and keeping the cadence (RPM) between 80 and 90 RPM per minute.

In order to take the class, I had an hour long evaluation that covered, among many things, medical conditions other than PD, what PD symptoms I had, and how my balance was – almost made the 30 seconds standing on one foot! Then, after taking my resting heart rate and blood pressure, I spent 20 minutes on the spin bike, upping the resistance until I couldn’t maintain 80 RPM for a minute, which provided my MHR.

I managed to pass the tests so last Friday I joined a full class of 20+ PwP’s for my first forced march on a bike!  After adjusting the bike, putting on the heart rate monitor and doing a light warm up spin (you know in the 60 – 80 RPM range) the instructor cranked up the music and off we went, upping the resistance while maintaining the cadence at 80 – 90 RPM for what seemed to be forever. OK maybe it wasn’t forever but it was a solid 40 minute workout, with brief slow downs for hydration before the next song came on.  All of our data was captured on a computer which then projected our heart rate and the percent of MHR up on a screen in front of the room.  In addition, the bike was equipped with a device showing our RPM, heart rate and % of MHR.

This program is based on research by Jay Alberts, PhD, at the Cleveland Clinic and a demonstration study by the Neuro Challenge Foundation here in Sarasota which have yielded promising preliminary scientific and anecdotal results.  The studies have indicated that doing this twice a week helps create new pathways (neuroplasticity) in the brain and participants have reported a reduction in tremors, better balance and gait, regained sense of smell, and increased energy. I have been interested in doing this for some time and I’m glad I get the opportunity to participate while here as they also offer this class at the YMCA in Knoxville if I want to continue when I get home.

The Neuro Challenge Foundation also sponsors the three dance for PD classes we are attending while here along with many other activities for PwP and Care Partners.  They provide a Parkinson Disease Resource Guide and offer a one on one Care Advisor Program to help PD Patients find the best treatment and support options available.  An excellent resource for PwP in the Sarasota area and one of the reasons we like to come to this area.  Speaking of dance classes, our Let Your Yoga Dance for PD class made the local paper, you can view the article here.  We have a good time in all three classes and it certainly helps keep me flexible.

Oh, did I mention we caught up with Dale, Monica and grand daughters Angelina and Ariana in San Francisco?  OK, maybe we were at Disney World’s Hollywood Studios and took advantage of the set.  We had a great time with them in Disney World and here at the beach.

We continue to enjoy our beach time in between dance classes and time at the gym and I can’t believe our time here is half over already!

Don’t forget to sign up for MJF Trial Finder by clicking on that large orange button on the top right and then you might as well join Fox Insight by clicking on the logo to your right!  Thanks.

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

 

Pedaling with Parkinson’s

As part of our stay here in Florida, we became temporary members at a local Gym that provides PwP specific classes along with all the other amenities of a large gym.  One of the classes they offer is Pedaling with Parkinson’s, a twice a week spin class specificly designed for PwP’s.  The objective of the session is to cycle for 40 minutes, keeping your heart rate between 60% – 80% of your MHR (maximum heart rate), and keeping the cadence (RPM) between 80 and 90 RPM per minute.

In order to take the class, I had an hour long evaluation that covered, among many things, medical conditions other than PD, what PD symptoms I had, and how my balance was – almost made the 30 seconds standing on one foot! Then, after taking my resting heart rate and blood pressure, I spent 20 minutes on the spin bike, upping the resistance until I couldn’t maintain 80 RPM for a minute, which provided my MHR.

I managed to pass the tests so last Friday I joined a full class of 20+ PwP’s for my first forced march on a bike!  After adjusting the bike, putting on the heart rate monitor and doing a light warm up spin (you know in the 60 – 80 RPM range) the instructor cranked up the music and off we went, upping the resistance while maintaining the cadence at 80 – 90 RPM for what seemed to be forever. OK maybe it wasn’t forever but it was a solid 40 minute workout, with brief slow downs for hydration before the next song came on.  All of our data was captured on a computer which then projected our heart rate and the percent of MHR up on a screen in front of the room.  In addition, the bike was equipped with a device showing our RPM, heart rate and % of MHR.

This program is based on research by Jay Alberts, PhD, at the Cleveland Clinic and a demonstration study by the Neuro Challenge Foundation here in Sarasota which have yielded promising preliminary scientific and anecdotal results.  The studies have indicated that doing this twice a week helps create new pathways (neuroplasticity) in the brain and participants have reported a reduction in tremors, better balance and gait, regained sense of smell, and increased energy. I have been interested in doing this for some time and I’m glad I get the opportunity to participate while here as they also offer this class at the YMCA in Knoxville if I want to continue when I get home.

The Neuro Challenge Foundation also sponsors the three dance for PD classes we are attending while here along with many other activities for PwP and Care Partners.  They provide a Parkinson Disease Resource Guide and offer a one on one Care Advisor Program to help PD Patients find the best treatment and support options available.  An excellent resource for PwP in the Sarasota area and one of the reasons we like to come to this area.  Speaking of dance classes, our Let Your Yoga Dance for PD class made the local paper, you can view the article here.  We have a good time in all three classes and it certainly helps keep me flexible.

Oh, did I mention we caught up with Dale, Monica and grand daughters Angelina and Ariana in San Francisco?  OK, maybe we were at Disney World’s Hollywood Studios and took advantage of the set.  We had a great time with them in Disney World and here at the beach.

We continue to enjoy our beach time in between dance classes and time at the gym and I can’t believe our time here is half over already!

Don’t forget to sign up for MJF Trial Finder by clicking on that large orange button on the top right and then you might as well join Fox Insight by clicking on the logo to your right!  Thanks.

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

 

Tag: Parkinson’s Disease

  • Pedaling with Parkinson’s

    Pedaling with Parkinson’s

    As part of our stay here in Florida, we became temporary members at a local Gym that provides PwP specific classes along with all the other amenities of a large gym.  One of the classes they offer is Pedaling with Parkinson’s, a twice a week spin class specificly designed for PwP’s.  The objective of the session is to cycle for 40 minutes, keeping your heart rate between 60% – 80% of your MHR (maximum heart rate), and keeping the cadence (RPM) between 80 and 90 RPM per minute.

    In order to take the class, I had an hour long evaluation that covered, among many things, medical conditions other than PD, what PD symptoms I had, and how my balance was – almost made the 30 seconds standing on one foot! Then, after taking my resting heart rate and blood pressure, I spent 20 minutes on the spin bike, upping the resistance until I couldn’t maintain 80 RPM for a minute, which provided my MHR.

    I managed to pass the tests so last Friday I joined a full class of 20+ PwP’s for my first forced march on a bike!  After adjusting the bike, putting on the heart rate monitor and doing a light warm up spin (you know in the 60 – 80 RPM range) the instructor cranked up the music and off we went, upping the resistance while maintaining the cadence at 80 – 90 RPM for what seemed to be forever. OK maybe it wasn’t forever but it was a solid 40 minute workout, with brief slow downs for hydration before the next song came on.  All of our data was captured on a computer which then projected our heart rate and the percent of MHR up on a screen in front of the room.  In addition, the bike was equipped with a device showing our RPM, heart rate and % of MHR.

    This program is based on research by Jay Alberts, PhD, at the Cleveland Clinic and a demonstration study by the Neuro Challenge Foundation here in Sarasota which have yielded promising preliminary scientific and anecdotal results.  The studies have indicated that doing this twice a week helps create new pathways (neuroplasticity) in the brain and participants have reported a reduction in tremors, better balance and gait, regained sense of smell, and increased energy. I have been interested in doing this for some time and I’m glad I get the opportunity to participate while here as they also offer this class at the YMCA in Knoxville if I want to continue when I get home.

    The Neuro Challenge Foundation also sponsors the three dance for PD classes we are attending while here along with many other activities for PwP and Care Partners.  They provide a Parkinson Disease Resource Guide and offer a one on one Care Advisor Program to help PD Patients find the best treatment and support options available.  An excellent resource for PwP in the Sarasota area and one of the reasons we like to come to this area.  Speaking of dance classes, our Let Your Yoga Dance for PD class made the local paper, you can view the article here.  We have a good time in all three classes and it certainly helps keep me flexible.

    Oh, did I mention we caught up with Dale, Monica and grand daughters Angelina and Ariana in San Francisco?  OK, maybe we were at Disney World’s Hollywood Studios and took advantage of the set.  We had a great time with them in Disney World and here at the beach.

    We continue to enjoy our beach time in between dance classes and time at the gym and I can’t believe our time here is half over already!

    Don’t forget to sign up for MJF Trial Finder by clicking on that large orange button on the top right and then you might as well join Fox Insight by clicking on the logo to your right!  Thanks.

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

     

  • It’s a New Year…

    and it’s way past time for a catch up blog post. I think the last post of substance was about Giving Tuesday at the end of November, 2015! So this is my attempt to condense a couple of months of activity into one post. Not long after the Giving Tuesday post, we made an unscheduled trip to Traverse City, MI to help out Mara’s sister with her used book store. We have no retail experience and it’s been over ten years since I’ve worked a 40+ hour shift but we had a great time taking care of business. If you are in the Traverse City area, be sure and stop in at her store The Bookie Joint downtown just off Front Street. (yep, a shameless plug!)

    We got home just in time to get ready for Christmas and enjoyed the holidays with our family and then it was time to start getting ready for THE BEACH! We arrived last Saturday and were awakened at 3am Sunday morning by the sounds of a tornado (I’ll be darned if it didn’t sound just like a train).  Luckily no one in our complex was injured but a lot of the units had windows and screens damaged and a lot of cars suffered broken glass and other damage.  We hadn’t planned on being part of the effort to prove the theory of global warning but we are thankful that no one was hurt and our unit and car were not damaged.

    On the Parkinson’s front, I was appointed webmaster for the East Tennessee Parkinson’s Support Group and spent a lot of free time during December learning WordPress and upgrading the site to the latest version.  When that wrapped up early in January I spent my free time updating the Tennessee Parkinson’s Disease Resource site with maps and adding new information.

    Somehow I also managed to take an exercise holiday and I began to notice my symptoms were getting worse, particularly the brady kinesia (ridgity).  Since we arrived in Florida, I have been walking at least an hour a day and we have signed up for two Parkinson’s dance classes  We are also planning to sign up for additional exercise classes at the Neuro Challenge Institute, a great resource for Parkinson’s Patients in the greater Sarasota area.  I am already noticing improvement which once again proves how important exercise is for PWP’s!  

    We also signed up for a weekly Let Your Yoga Dance class. We were introduced to Let Your Yoga Dance while at the Kripalu retreat in October 2013 and this class reunited us with instructor/founder Megha and Joel and Melissa whom we first met at the retreat and meet up with every year while in Sarasota.  Our first class was yesterday and Megha had us doing deep breathing exercises, stretching and dancing in no time. It is a great class that not only provides exercise but brings ‘healing through joy’. 

    Coming up we will attend the Neuro Challenge Insitute annual Parkinson’s Symposium on Saturday where one of the topics to be covered is the Tasigna trial conducted at Georgetown University.  Tasigna is a leukemia drug that appears to stop or reverse some of the PD symptoms during a small test involving 12 Parkinson’s patients.  I am looking forward to hearing more about the first trial and the results and will provide more information in the next post.

    So there you have it, a short version of a very busy couple of months.  Oh, did I mention I am still wearing my smartwatch and providing data for the Fox Insight Trial?  If you haven’t signed up you can do it here, and don’t forget to also sign up for Fox Trial Finder at the same time and join over 52,000 of us who have already signed up!

     

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

     

  • Giving Tuesday is Almost Here!

    Tuesday, December 1st is Giving Tuesday. Black Friday is over and Cyber Monday is almost over and Tuesday will be a great opportunity to take some (or all) of the money you saved this weekend and give back by making a donation to a Parkinson’s Disease organization or another cause of your choice. As in past years, many charitable organizations have a matching plan that will double your Giving Tuesday donation for double the benefit.

    In case you need a little inspiration, I am reposting the following article “What is a Parkie? And Why are They so Expensive?“.  This article was written by Alan Zimmerman vice president of the East Tennessee Parkinson’s Support Group and posted on their website,  PK Hope is Alive . Alan is a strong and active advocate for Parkinson’s research and education. In addition to being Vice President of the group, he is the Assistant Tennessee State Director for the Parkinson’s Action Network (PAN) and a member of the Parkinson’s Disease Foundation (PDF) People with Parkinson’s Advisory Council.

    Take some time on Tuesday and support the cause of your choice,  There is a lot of exciting news on the research front and our donations can make a difference!  Happy Holidays!!

     

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

     

    WHAT IS A PARKIE? AND WHY ARE THEY SO EXPENSIVE?
    by Alan Zimmerman
     
    Parkies are expensive devils.  How does $25 Billion per year in the US sound to you?  Not only that,we discover another 60,000 Parkies each year, right here in good old America.  That number that is guaranteed to rise.  And, each Parkie spends about $2500 per year trying to be less Parkie with an assortment of medications and untold more on supplements.
    So, what then is a Parkie?  It is what people with Parkinson’s disease call each other.  Yep, the term is pretty much reserved for those in the Parkie club.  They would rather be known by everyone else as people with Parkinson’s (PWP).
    I know that you know someone who is a PWP.  You may even have a relative with PD.  You have seen them taking short steps and all bent over and very stiff and slow, or maybe they are using a walker to get around or perhaps they shake uncontrollably.  Maybe you can’t hear or understand them when they talk.  Perhaps you, nor they can read their handwriting.  The list goes on and on.
    Who gets this disease?  Men are slightly more likely and most people are in their 60’s when diagnosed.  But, about one in ten are 45 or under.  By the time your symptoms are bad enough to be diagnosed, one has already lost more the 60% of their dopamine.  You see, that marvelous thing called a brain compensates until it no longer can.  Unfortunately, that is not the blessing it seems to be.  As more interventions are developed, the sooner the diagnosis, the better.
    Wait!  We have new terms: diagnosis and dopamine.
    Let’s take “diagnosis” first because most everyone has had at least one of those.  In the case of Parkinson’s there is no definitive way of diagnosing except by physical exam.  And, it really needs to be done by a neurologist who specializes in movement disorders.  There is no blood test or scan that will determine for sure that the monster called PD has attacked.
    What’s “dopamine?”  It is a chemical found in the brain.  What does it do?  Lots of things that we know about and probably some yet to be discovered.  For one, it is a communicator.  Somehow it signals the muscles to do whatever the brain tells them to do.  It also has something to do with mood, pleasure, depression and many other important functions.
    What causes this PD thing?  Nobody knows for sure but most scientists believe it is probably a combination of genetics and something in the environment, like heavy metals, toxins, or pesticides that trigger the beginning of the disease.  That is pretty much where science is.  OK, so where does it start?  Nobody is sure where exactly but some of the latest thinking is that it starts in the gut or maybe even the intestines.
    So, bottom line, what is the cure?  There isn’t one.  It just gets worse over time as more brain cells die.  OK then, what is the treatment?  Mostly, at this stage in modern medicine, only symptoms can be treated.  A few things may slow it down like exercise programs.
    We also have this thing called Deep Brain Stimulation (DBS).  Hold on, what’s that?  It may scare you if I tell you but here goes.  DBS is where a PWP has one or preferably two holes drilled in the scull.  Then you insert electrodes into certain places in the brain.  Then, you attach all that to a battery which is eventually buried into your upper chest.  Oh, I forgot to tell you.  Usually the patient is awake when those electrodes are being put in place.  Why?  So that the neurosurgeon can get feedback from the PWP.
    So, I guess we need more research.  There is a bunch going on world-wide, but we could always use more.  Researchers eat and have families and require laboratories.  What that means is that research has a price tag.  What a price tag means is that more donations are required.
    What else is needed?  More movement specialist physicians for one.  There are not enough now and certainly too few going to school while the Parkie population increases.  So, we need to encourage doctors to devote an extra two years of their life learning the intricacies of movement.  Guess what?  That too carries a pretty hefty price tag.  So, we need more scholarships which means we need more donations yet again.
    So, let’s review.  People with Parkinson’s are growing in numbers rapidly.  The disease is progressive and degenerative.  So far, we can pretty much treat the symptoms only.  But, through massive research, we believe that disease altering therapies are going to become a reality pretty soon.  What is pretty soon?  Maybe 5-10 years.  But, that only happens with support for research, i.e. donations.