• Hanging at the Beach!

    Last Thursday we visited the University of Florida Movement Disorders Center in Gainesville, FL. As I mentioned in the last post, the visit included appointments with Dr. Hess, and Occupational, Physical, and Speech therapists. One of the prerequisites for this visit was I had to be off of my PD medication for at least 12 hours so I arrived pretty stiff and slow. When I checked in I was given an IPad so I could complete a questionnaire that I will need to do every visit. We then met with a tech who went over my general info, asked if I agreed to video taping and collection of my information for their clinical database. He then asked me a series of questions that included testing of my cognitive abilities and he said I was fine so I fooled him :).  These were the first tests of many I had during the day and they will all be repeated on every visit to help them identify any changes between visits.
     
    Next we were met by Dr Hess’s nurse who did the checking of my weight, blood pressure and other vitals and inputting of my current meds.  Then Dr Morita, an associate of Dr Hess, spent at least an hour asking lots of questions and performing tests including the UPDRS (Unified PD Rating Scale) which was given at the start of the interview, then I was allowed to take my medication and was tested again about 30 minutes later.  He was great and spent a lot of time making sure he had my answers correct and answering any questions we had.
     
    After he was done, he met with Dr Hess and then they both returned to discuss the findings, Dr Hess repeated a couple of the tests and thought I was possibly slightly under medicated but felt that since the Mirapex was working and I wasn’t having any major side effects, no change of med was needed at this time.  Since I will continue with my Knoxville Neurologist, we set the next visit for a year from now.
     
    The next meeting was with Lisa Warren, an occupational therapist who also gave me more tests, asked lots of questions and gave us several good ideas for some stretching to maintain flexibility and improve my posture.  We were surprised to find that my arm strength is above average for my age group as I felt I was weaker since the symptoms appeared. We were very happy with Lisa and the help she provided.
     
    Next up was an hour with Shankar Kulkarni a physical therapist who gave me more tests and many great ideas for what PT I should have, again mostly stretching to reduce rigidity and ideas to improve my gait. He had me marching around the PT area swinging my arms and lifting my knees like a guard at Buckingham Place.  He also showed me the proper method to get in and out of bed. Again, just what we had hoped for and very helpful. He said that they have a weekly PD exercise class on Thursday at 5:15 and he recommended I attend for more ideas.
     
    The final meeting was with a group of speech therapists (some were in training) who gathered more history, gave me more tests and recorded my speech (which had been soft all day already).  Again we discussed  several ideas for helping with the soft speech but decided I didn’t need an x-ray swallowing test since I haven’t had any issues in that area yet, but will have one next time.After a full day, we decided we might as well attend the PD exercise class which was conducted by PT students and gave us 45 minutes of exercise and we got some more ideas for exercises we can do it home.
     
    It was a very productive visit and worth the drive down. Meeting with staff who specialize in PD was great. The general outcome was to fight the progressive nature of PD I need to up my exercise (30 minute walk isn’t enough) and stretching.  My current medication is working so no change was recommended and they want to see me again in a year.  I came away with a lot of good ideas from the therapists and have the ability to contact any of them or the Doctors via email with any questions we might have which is nice.Since we happen to be close to our usual beach location in Siesta Key, we are spending a week at the beach where we hope it will be warm and sunny so we can get in a lot of exercise! 🙂
  • Welcome 2014!

    Well we have survived the holidays and here it is 2014! The Christmas tree is down and the house undecorated and it is time to make some resolutions and get the diet back to normal. The week before Christmas I visited my neurologist and he doubled my medication dosage to .5 mg three times a day.  By Christmas day the increase was having a positive effect on my balance and ‘sticky’ feet so the timing was perfect.

    As many of us do, I have resolved to maintain a weekly exercise routine.  I will exercise at least 30 minutes a day 5 days a week as part of the 2014 Mary-thon and I have set a ‘stretch goal’ (remember those?) to up the time to 45 minutes for at least some sessions as the year progresses.  As I have mentioned before, exercise has been shown to be the best thing I can do to slow the progression of Parkinson’s and fight the stiff muscles so it behooves me to step it up.

    I started PT last month and they have designed a plan to improve my core strength and balance.  The staff at Star PT seem to enjoy working me over a couple of times a week but it’s for my benefit (so they say):) I also plan to add yoga or Tai Chi, both of which help with the stiffness and balance, to our exercise routine this year.

    In a couple of weeks we will go to the University of Florida Center for Movement Disorders and Neurorestoration which is a National Parkinson’s Foundation (NPF) Center of Excellence.  They incorporate an integrated multidisciplinary approach so I have appointments with a Neurologist, a Physical Therapist, an Occupational Therapist and a Speech Therapist over the course of the day.

    The Center is headed up by Dr. Michael Okun who is also the medical director for NPF.  He has written an excellent book,”Parkinson’s Treatment: 10 Secrets to a Happier Life” which is one of the first books I read after my diagnosis.  He speaks at length in the book about why this integrated approach is successful.  Since we are in Florida, after our visit to the Center we will spend a few days at the beach before heading home.

    Another resolution I am making is to be a better blogger!  I would like to post on a regular schedule and will work to do that this year.  We will see how that works out!

  • Happy Holidays!!

    Here it is, Christmas Eve, and the house is decorated, the gifts are under the tree, Christmas carols are playing and the grocery shopping is done!  And this morning we had snow flurries here in Eastern TN, nothing sticking to the ground but just enough to get you in the mood and to say we had a White Christmas!

    I just wanted to take a moment to wish you all a Happy Holiday Season. It’s a magical time of year and I hope you all enjoy time with family and friends.  I thank you all  for your support and positive thoughts since I started this journey with Parkinson’s.  Thank you and Merry Christmas!

Our Sarasota Experiment – Part One

We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool.  We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
the beach.

We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors.  They are also working to get certified as PWR  (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so.  The program was developed by Becky Farley who also developed the LSVT BIG program.  The class was great and incorporated chair exercises along with standing exercises using exaggerated movements.  You can read more about PWR here.

We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week.  I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health.  And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs.  And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank).  I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

 “I’m always preaching about how the studies prove that exercise is the
only proven way to slow the progression of PD.  If you are told there’s
this miracle fix that can ensure your body works the way it does (or
maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret?  Well,
it’s no secret, you just have to get up and move the more the better.
If you say you “can’t” run anymore “try” walking.  If you say you
“can’t” do aerobics “try” water aerobics.  “Can’t” handle impact on your
feet “try” biking.  Your balance is bad and you say you “can’t” because
you’ll fall, then try a stationary bike with a good seat, or chair
yoga!
” (Read the entire post here)

So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website.  The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool!  Click on the Davis Phinney Foundation logo on the right to check it out.

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

Our Sarasota Experiment – Part One

We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool.  We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
the beach.

We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors.  They are also working to get certified as PWR  (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so.  The program was developed by Becky Farley who also developed the LSVT BIG program.  The class was great and incorporated chair exercises along with standing exercises using exaggerated movements.  You can read more about PWR here.

We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week.  I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health.  And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs.  And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank).  I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

 “I’m always preaching about how the studies prove that exercise is the
only proven way to slow the progression of PD.  If you are told there’s
this miracle fix that can ensure your body works the way it does (or
maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret?  Well,
it’s no secret, you just have to get up and move the more the better.
If you say you “can’t” run anymore “try” walking.  If you say you
“can’t” do aerobics “try” water aerobics.  “Can’t” handle impact on your
feet “try” biking.  Your balance is bad and you say you “can’t” because
you’ll fall, then try a stationary bike with a good seat, or chair
yoga!
” (Read the entire post here)

So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website.  The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool!  Click on the Davis Phinney Foundation logo on the right to check it out.

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

Tag: Travel

  • Our Sarasota Experiment – Part One

    We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

    We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool.  We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
    the beach.

    We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors.  They are also working to get certified as PWR  (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so.  The program was developed by Becky Farley who also developed the LSVT BIG program.  The class was great and incorporated chair exercises along with standing exercises using exaggerated movements.  You can read more about PWR here.

    We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week.  I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health.  And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

    You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs.  And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank).  I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

     “I’m always preaching about how the studies prove that exercise is the
    only proven way to slow the progression of PD.  If you are told there’s
    this miracle fix that can ensure your body works the way it does (or
    maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret?  Well,
    it’s no secret, you just have to get up and move the more the better.
    If you say you “can’t” run anymore “try” walking.  If you say you
    “can’t” do aerobics “try” water aerobics.  “Can’t” handle impact on your
    feet “try” biking.  Your balance is bad and you say you “can’t” because
    you’ll fall, then try a stationary bike with a good seat, or chair
    yoga!
    ” (Read the entire post here)

    So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website.  The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool!  Click on the Davis Phinney Foundation logo on the right to check it out.

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