• Where in the world is Tom

    For those of you who like to keep track, July 24th – August 6th encompasses several milestones beginning with July 24th which is the 11th anniversary of my PD diagnoses. Yes, it has been 11 years and Mara and I think I am better now that I was then! Certainly I am in better physical shape due to the 5 – 7 days of exercise each week and my symptoms of bradykinesia and other motor symptoms are better because of taking Carbidopa/Levodopa. The fact that I have been able to reduce my Levodopa Equivalent Daily Dose (total LD per day from all sources) from 1688 mg to 932 mg over the past 5 years is certainly an indicator that something is working right.

    This week we celebrated our 34th wedding anniversary with a superb dinner out and a fine bottle of champagne! (I need to add the champagne tradition to the PD anniversary) I wouldn’t be in the shape I am without Mara’s support. She is not only the love of my life and my best friend, she is also my caretaker extraordinaire!

    Also this week I will celebrate my 78th birthday ( already have the champagne for this one!)

    And on August 6th this blog will be 11 years old, and this will be the first post of 2024! Yep it’s been 16 months since my last post and I have no valid excuse except to blame it on my Parkinson’s Disease non motor symptom of apathy. I have had various ideas or information that I could use to create a post but somehow they never get written. But I am going to make the breakthrough today!

    While I have successfully reduced my Levodopa Equivalent Daily Dose from 1688 mg to 932 mg per day, I haven’t stopped my PD progression particularly in non-motor symptoms. In addition to apathy, my handwriting is working it’s way to a completely illegible scrawl, my speech continues to get softer (I know, I should be using the Speak Out tools to improve this one) and constipation and drooling have become more prevalent. On the plus side, reducing my Levodopa has reduced my dyskinesia and something I am doing has improved my sleep, often getting 6 – 7 hours per night according to my FitBit:

    I wish I knew what I am doing to improve my sleep, I’m pretty sure I could patent it and make a fortune! I don’t follow any of the hints you see like reduce screen time ( I usually get in bed and read on my iPad!) or limit fluid intake before bed, or take melatonin or use CBD/Marijuana. The only thing I have doing different for the past 6 or 7 months is following a version of high dose thiamine therapy or vitamin B1 (HDTT) . I have noticed some improvements from following this therapy and I will discuss the details and process in my next blog post. There, I’ve set myself a task and I will plan to write the next post no later than next week.

    Speaking of tasks, I did update the Now What document with recommendations for persons who have been recently diagnosed with PD. You can click here or at the top right to read or print it.

    Until then, if you are a long time subscriber and wondered where I have been, I hope this finds you in good health and thank you for sticking with me despite my 16 month hiatus. Welcome to my new subscribers that have signed up in the last 16 months , now you know why you haven’t seen any posts.

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

  • It’s Parkinson’s Awareness Month – 9th Edition

    Yep, in the 10 years since I was diagnosed with PD, I have written at least one post in April about Parkinson’s Awareness Day, or Week or Month. The only year missing is 2018 when we were moving into our Sarasota home. I thought it would be fun to take a trip down memory lane and see what I wrote about in the past 10 years.

    The first year was 2014 (click on the links to view) and most of the post was about Autism, my colonoscopy, my first dermatologist visit and how nice the weather was that week, Finally at the end of the post I mentioned the local Unity walk.

    The next year, 2015, I quoted paragraphs from another blogger – Corey King. His views about awareness resonated with me and I hope my readers too.

    In 2016 my post was long but all about PD awareness! So after 3 years I have caught on to the program and filled a post with my thoughts.

    2017 was a quick one, with a link to a video about Unite for Parkinson’s.

    In 2019 I had two posts (making up for missing 2018) the first one about our spinning class moving the bikes and holding our class in the lobby of the YMCA which was covered by a local TV station and resulted in my first TV gig! In the second post I covered the YMCA ride again and discussed how the class helps me fight PD. I also talked about experimenting with my medications doses and I am pleased to see that I am taking even less 4 years later!! EXERCISE WORKS!

    In the COVID year of 2020, my World PD Day post was a review of the new book Ending Parkinson’s Disease, A Prescription for Action by Ray Dorsey MD et. al. The book was the basis for the Ending Parkinson’s movement that continues to lobby and push for research funding and has pushed to ban various chemicals that appear to cause PD.

    In 2021 I discussed the book from the previous year and pushed for readers to join PD Avengers, a global alliance to end parkinson’s. If you haven’t joined, it’s not too late, click on the icon to the right and be a PD Avenger.

    And last year, I introduced Spark! the new symbol for Parkinson’s Awareness. I also pushed again for readers to join PD Avengers and shared some infographics from the European PD organization on the myths of PD.

    Now it is 2023 and we are getting closer to finding a marker that will improve the results of research trials looking for a cure or at least a disease modifying solution. We know that exercise is the best medicine to slow progression and we have many more options to deal with ‘off’ periods than there were in 2013. There have been significant improvements to DBS and Focused Ultrasound options to help deal with motor issues and tremor. Trials of stem cell implants are at stage 2 and 3 and we know a lot more about the genetics of PD. But I am sorry to report that the cure for Parkinson’s is still at least 5 years away, just like it was 10 years ago.

    Parkinson’s Awareness month will continue into the foreseeable future as the hunt goes on to solve PD. So, join PD Avengers, donate to your favorite PD organization, join a clinical trial and let your elected officials know that you support the Ending Parkinson’s initiatives.

  • We Survived Hurricane Ian!

    We have lived in Sarasota, Florida for 6+ years and have come to believe in the urban legend that Sarasota is protected from hurricanes because the Native Americans who first settled here blessed the lands to stay eternally safe from destructive storms and hurricanes. Fact is Sarasota Bay has not been a bull’s eye for a major hurricane in Florida since reliable records began in 1871.

    But two weeks ago hurricane Ian that was forecasted to hit in Tampa to our North, started slipping south and suddenly the forecast was for it to come ashore in Sarasota. The emergency management authorities started evacuating the barrier islands, and we joined with a few neighbors to install hurricane shutters in preparation for a direct hit. Since 2002, the Florida building codes require new construction be able to withstand winds up to 150MPH. Our home was built in 2013 so it meets the new codes and it looked liked we were going to test the construction!

    We opened our home to couple of friends who had to evacuate and one of them joined us as we hunkered down and got ready to ride out the storm. The Indian blessing seemed to be working as Ian continued to drop to the south and came ashore near Ft Myers’s about 50 miles (as the crow flies)south of us and then tracked northeast thru the city of Northport about 20 miles south of us on its way to the Atlantic, passing over Sarasota with windspeeds of 85 -100 mph. The wind and rain went on most of the night and you could feel the gusts when they hit the house.

    We got up the next morning to find the house was undamaged except for a couple of loose roof tiles. There were lots of trees and bushes down in the area but no physical damage that we could see. Even more amazing was we never lost power! According to Florida Power and Light, of their 287,000 customers in Sarasota 280,000 were without power, so we were one of the lucky 7,000. We did lose our internet and cable for a several days, making it hard to keep up with what was happening as cell reception was spotty due to power being out to cell towers or the towers being damaged by the hurricane.

    It’s been two weeks since the hurricane and most of the debris in our development has been cleaned up. Our tennis courts are back in operation after replacing the clay that blew off and putting the wind screens back up. There are still pockets of the area without power or internet particularly south of us in Northport where a large portion of the city was flooded by the Myakka river which is still above flood stage.

    So, thanks to an Ancient Indian Blessing, good neighbors, and the updated Florida building codes, we survived our first and hopefully only hurricane. We are able to get groceries and fuel again and play tennis and cycle for PD. Life is returning to normal.

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

 

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

 

Month: January 2015

  • 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

     

  • Brrrr, It’s Cold!

    Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
     
    I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
     
    It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
    • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
    • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
    • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
    • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
    • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
      Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
    • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
      patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
     I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
     
     
    Happy New Year!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius