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!

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

Tag: Travel

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
January 9, 2015
The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

We had a wonderful time in Spartanburg SC at the Parkinson’s Disease Southern Symposium. I have tried to summarize what went on during this three day event below. Thanks go out to Lisa Cox, Linda Morgan, Ken Cater and Bill Wilkins, the team that conceived and planned a very successful event.

The first day consisted of opening ceremonies followed by exhibits and lunch at the Spartanburg County Library, a dance class at Ballet Spartanburg Studios and a screening of the documentary Capturing Grace by Dave Iverson. On our walk over to the library we met Steve Quam who has bicycled across the US 3 times (and motorcycled once) since he was diagnosed with PD in support of the Davis Phinney Foundation! He is also a musician and provided music before lunch was served.

Capturing Grace by Dave Iverson is an inspiring film which followed a group of PwP’s in Brooklyn as they trained for and presented a ballet/dance production. Watching the difference dance made in their symptoms was fascinating and the finale was great. I highly recommend you see it if you get a chance.

In the evening we attended a talk by Bill Geist, CBS Sunday Morning Correspondent and PwP, also sponsored by the Spartanburg County Library. He spoke about hiding his diagnoses from family, friends and co-workers for several years, finally ‘coming out’ on the show. We finished the busy day with a dinner where our panelists from the Atlanta Partner’s in Parkinson’s meeting were reunited. We enjoyed catching up with India Pender Martin during dinner.

After dinner Colonel Michael “Rich” Clifford, former astronaut joined Bill Giest at the podium to discuss living with Parkinson’s. Colonel Clifford was diagnosed with PD at age 42 but was cleared to fly by his NASA commander. He flew one more mission which included the first American spacewalk while docked to the Russian MIR space station in 1996. The historic space mission is the subject of a documentary called “The Astronaut’s Secret” which explores his career as an astronaut and how he and NASA kept his disease a secret for more than fifteen years.

Day two included time to peruse the exhibitors, a Support Group Luncheon hosted by the Parkinson’s Association of the Carolinas that included more music by Steve Quam, and a motivational presentation by John Bauman on the topic “Inspired by Parkinson’s: How to Have an Amazing Life in the Face of Life-Changing Events”.

We also heard from Dr. Michael Okun MD, Director of the Center of Movement Disorders and Neurorestoration at the University of Florida. He is a dynamic speaker and took questions from the audience about PD and finished with a quick summary of new research. Thanks to NPF who provided attendees with a free copy of his book “10 Secrets to Living Better with Parkinson’s”.

Our final activity for the day was to gather in the rotunda of “The George” a building nearby for about 45 minutes singing old favorites. It was a great hearing our singing amplified by the natural acoustics of the rotunda.

Day three was the Davis Phinney Foundation Victory Summit held at the TD Convention Center in Greenville, SC. The morning presentations included building your Parkinson’s Toolkit (eat right and exercise), the need for daily exercise (the only prescription with unlimited refills), cognitive change and non-motor symptoms (exercise body and mind to impact your mood and wellbeing), and research (sign up for Fox Trial Finder and participate in a clinical trial). Each presentation was made by leading Movement Disorder Specialists and a Physical Therapist and were informative and on point.

After lunch Local Hero awards were presented to Lisa Cox and Linda Morgan for their PD advocacy. This was followed by Moments of Victory, a presentation by Davis Phinney. He talked about his diagnoses, how DBS helped his tremor and why he believes in celebrating moments of victory with his characteristic arms above the head in a V. He pointed out we are a tribe and not alone in our fight against PD. It was an inspirational and motivating presentation that had the 600+ attendees on their feet, arms over their heads and ready to celebrate every victory.

We then attended a presentation on Medication Management and Strategies where we heard about the various medications used to treat PD symptoms. The final session we attended was Clinical Trials: Propelling Research Forward a panel discussion about current research. One topic we discussed was the need for clinical trial participants to support ongoing research, a topic that I am passionate about. Both patients and researchers recognize that changes are needed to the current process but that won’t happen overnight and in the meantime we need clinical trials and participants. If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats our symptoms. Okay I’ll get off my soapbox for now, but expect to see more about this issue in future posts.

So that was the Victory Summit, a full day of information sharing and motivating sessions that made you know we are not alone and that research continues in the search for a cure. I highly recommend attending the Victory Summit if you get an opportunity. More information can be found on the Davis Phinney Foundation website.

Oh yes, I promised to mention my beer brewing adventure. I opened my first bottle of this batch today; it is a brown ale and was pretty tasty. This was my second attempt and it went a bit smoother than the first try but it is a process that uses the kitchen for about 4 hours and most of the pots and pans in the house!

At the Victory Summit we reconnected with Claudia Marshall, Research Engagement Assistant at the Michael J Fox Foundation, whom we met in Grand Rapids. We discussed the trial we are participating in and also how we can improve clinical trial participation. I’ll have more about that in the next post – see you then.

November 20, 2014
Clinical Trial Needs, Southern Symposium and NOLA!

I have previously posted about the need for clinical trial participants. I have joined Fox rial Finder which has a large database of trials and provides a list of possible research opportunities based on your desired parameters (distance from home, # of years with PD, etc.). Mara and I recently matched up for a trial being conducted at the University of Alabama Sparks Center, Mara as a control and I as a PD patient. The trail is called LRRK2 and Other Novel Exosome Proteins in Parkinson’s Disease (that’s a mouthful!) LRRK2 is one of the genetic markers closely associated with development of Parkinson’s Disease. The official description is as follows:

“This proposal seeks to 1) determine whether there are biomarkers associated with Parkinson’s disease (PD) susceptibility and/or progression in exosome-proteomes derived from PD patients versus controls, and 2) to determine if LRRK2 expression and/or phosphorylation are significantly lowered in the exosomes of individuals treated with the potent LRRK2 inhibitor sunitinib (a multi-kinase inhibitor compound), to establish an assay for on-target effects for future LRRK2 inhibitor clinical trials.”

Sounds pretty intimidating but all that is required now is giving urine and blood samples and Mara will be given the PD Screening questionnaire and I will be tested to verify my PD diagnoses. They expect it will take about 1.5 hours and we have an appointment next week, so I will provide an update after the visit.

Speaking of clinical trials, Michael J Fox Foundation has a need for PwP’s to participate in BioFIND, a study also looking for PD biomarkers. Participation in BioFIND requires only two visits to a clinical site in a two-week period. The visits will include a combination of clinical assessments, sample collection and written surveys. With the aim to complete recruitment as soon as possible, BioFIND needs volunteers now. Go to this link to find out if you are eligible and if there is a site near you. (I am not eligible as I haven’t been diagnosed for more than 4 years)

We are in Spartanburg SC for the Parkinson’s Disease Southern Symposium which starts tomorrow and runs for 4 days. Based on the agenda, it looks like we will be busy! We are looking forward to meeting old friends and making new friends. The agenda includes a screening of Capturing Grace, the documentary by Dave Iverson and attending the Davis Phinney Foundation Victory Summit, an all day event about living with Parkinson’s.

We had a great time in NOLA (New Orleans LA), attending a wedding and then spending a few days with friends touring the town. The weather was perfect and we enjoyed the sights, sounds, and food of the French Quarter which included a beignet and coffee at Cafe Du Monde. Our favorite spot for breakfast was TOAST a small restaurant just a block from the house we rented in Uptown. They had a great mural on the wall as you can see in this photo.

I know this is the second post without discussing my experiences brewing beer but I promise it will make the next one, it should be ready to taste early next week. See you then.

November 13, 2014

Hanging at the Beach!

Welcome 2014!

Happy Holidays!!

Where in the world is Tom

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

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

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

We Survived Hurricane Ian!

Nine Years

Tag: Travel

Brrrr, It’s Cold!

The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

Clinical Trial Needs, Southern Symposium and NOLA!