• Beaching, Exercising and Blogging!

    Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

    Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

    On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

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

  • Increasing the Exercise Routine

    Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.
    At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.
    This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi.  During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace.  I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
    I have noticed reduced rigidity and shuffle along with the  improved walk times over last
    year’s beach visits.
    Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.
    This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week!  Thanks for reading.
    “It does not matter how slowly you go as long as you do not stop.” – Confucius

  • Patient Centric Care in Action

    For the last few months, Mara and I have been discussing changing neurologists with the idea of being seen by a Movement Disorder Specialist (MDS). I was seen by a MDS when we went to U of FL last year we felt that it was too far of a drive for regular appointments. The Vanderbilt Movement Disorder Clinic in Nashville is also an National Parkinson Foundation (NPF) Center of Excellence, they conduct a lot of Parkinson’s research and it is a two hour drive instead of ten, so we decided that was where I would go. So this week I met with Dr. Thomas Davis, a MDS and clinical researcher and Director of the Vanderbilt Movement Disorder Clinic. It was a very positive experience and we were quite impressed with Dr Davis and the Vanderbilt Movement Disorder Clinic staff.

     

    After a simple check in process that took all of 5 minutes and only required my electronic signature on the usual forms, that’s right, I did not have to fill out any health history forms, who to contact, etc.! I had barely sat down when a nurse called me into an interview room where she took my BP, weight, and medical history once again without me having to fill out a form! She then took me to the examination room where we met Dr. Davis.

     

    During the meeting with Dr Davis we discussed my PD history, what medication I was on and how it was working, what other symptoms I was having plus he performed the usual PD tests, finger and toe tapping, walking, etc. He also tested  my cognitive skills and once again I passed! We then discussed my medication routine and he recommended I start taking levadopa/cardidopa along with a reduced dose of Mirapex four times a day instead of three. We were happy with this recommendation as it seemed the Mirapex has not been as effective in reducing my rigidity and I am taking the maximum dose. He also noted that exercise is still the best prescription for PwP and reducing the rigidity and other symptoms will allow me to up the exercise routine. The appointment lasted about 50 minutes and we came away feeling that he and the staff cared about me as a person and a patient and we had made the right decision to transfer to Dr Davis.

     

    We also met with Kelly Arney, research outreach coordinator, whom I had been in contact with last year about a clinical trial sponsored by NPF to track the effects of treatment. I did not qualify then because the trial required participants to be seen by the Clinic, but now that I am a patient, I should be able to participate beginning with my next visit at the end of April. We also discussed upcoming clinical trials with both Dr Davis and Kelly and they will contact me if I meet the qualifications.

     

    When I checked out, they had me sign up for access to their electronic health record system which gives me access to all of my records and a way to email Dr Davis. Again the process was simple and an employee walked me though the sign up at a terminal in the waiting area, then gave me full access to the system.

    The NIH defines patient-centered care as follows: “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The care we received at the Vanderbilt Medical Center Movement Disorder Clinic certainly fit the NIH definition.

     

    And the positive experiences continued because Friday we checked into our ‘home away from home’ a villa on Siesta Key! Yes that’s right, we are at the BEACH! We will be attending a Parkinson’s symposium on Saturday and I also plan to sign up for the Big and Loud program while we are here so I will have plenty to blog about next time. Until then don’t forget to sign up for the Fox Trial Finder, we all have a stake in finding a cure.

     

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

     

IT IS WHAT IT IS!

Beaching, Exercising and Blogging!

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

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

Other Posts

IT IS WHAT IT IS!

Beaching, Exercising and Blogging!

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

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

Other Posts

Tag: Clinical Trials

  • Beaching, Exercising and Blogging!

    Beaching, Exercising and Blogging!

    Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

    Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe.  After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

    On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles  help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process.  Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed!   See you next time.

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • At the Beach — Again!

    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.

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