After my last post, I started thinking about the support network we have built because of the people we have met while attending the Kripalu Wellness Retreat, the Partner’s in Parkinson’s event and the Grand Challenge meeting. The more I thought about them, the more I realized how every one of us has been impacted differently by the many symptoms of PD and how we hunger for information from each other. As Bill Wilkins said in Atlanta, I can meet a person with PD and immediately strike up a conversation and that conversation often gravitates to questions like:

When were you diagnosed?
What symptoms do you have?
What medications are you using?
How are you dealing with….?
Do you belong to a support group?
What kind of exercise regimen do you follow?

In the past year we have met many other PwP’s, care partners, researchers, representatives of organizations supporting Parkinson’s patients and others involved in Parkinson’s care or research. And I have realized how many everyday heroes we have met, for example the couple whose son was diagnosed with early onset PD and can no longer work, or the school teacher who had to retire because she lost her voice, or Soania who was diagnosed at 27 as she was just starting her medical career and now writes a blog for about.com health including one about another hero we met, Steve, who has come up with an innovative way to transport PwP to clinical trials, or Saul from Atlanta whose daughter / care partner was diagnosed with MS and Sandra who started our local support group because she saw a need and many, many more. All heroes in my book.

Then there are the many people we have met that work or volunteer for the Michael J Fox Foundation (MJFF) or the Cure Parkinson’s Trust (CPT) or the National Parkinson’s Foundation (NPF) or Parkinson’s Disease Foundation (PDF) or Brian Grant Foundation (BGF) or Parkinson’s Action Network (PAN) and others. These individuals are dedicated to the cause of finding a cure for PD and they are passionate about it. Some have PD and some have relatives or friends with PD but they all want to be involved in research or fund raising or developing educational materials or advocating on behalf of PD patients at the state and national and world levels. They include Tom Isaacs whom I mentioned in the last post and Jon Stamford of CPT, Claire and Claudia from MJFF, Joyce from NPF, Steve and Linda from PDF, Bill of the Wilkins Foundation, Brian Grant from BGF (duh), and Israel from PAN.

And while we didn’t meet Michael J Fox, I know I am not alone in viewing him as a hero, in fact, he was just selected as the first WebMD Health Hero Hall of Fame winner for his significant accomplishments, both personally and through his foundation, to raise awareness, expand funding, develop treatment options, and advocate for patients in his tireless quest to find a cure for Parkinson’s disease.

And there is the online community which includes some of the same people I’ve already mentioned that I follow on Twitter along with Robert who writes the blog Tremors in the Universe and has just published a book of the same name with part of the proceeds going to MJFF and NPF, and Grove who represents PAN for the State of Idaho and Kaitlyn whom we first met at Kripalu and many, many more. Again even more heroes.

These are just a few examples of the many dedicated PD advocates I have met in the past year. I could easily fill several more pages with examples of the people we have met and the actions they have taken to live with Parkinson’s or help someone else live with PD or the research they have done to find a cure, or the actions they have taken to raise funds for research and education and they are all everyday heros.

Finding a cure or even a way to slow the progression won’t happen without this patient involvement and advocacy. As Tom Isaacs said in Grand Rapids, “We must make patient involvement the rule, not the exception.” He found that PwP’s who are involved in any constructive way benefit from an improved sense of wellbeing and fulfillment. Being able to go to Kripalu and Atlanta and Grand Rapids has resulted in having expanded my network of supporters and increased my understanding of PD. My online community helps me stay current on PD news, new medications and therapies, how others are dealing with the many symptoms of PD and provide me with another support network.

We plan to keep on traveling to Parkinson’s events while I still can and we will continue to be advocates for PD. This includes advocating for increased patient involvement in all aspects of PD from clinical trials to pushing for increased funding for PT & OT visits and for changes that will allow PwP to take or get your medication on time while hospitalized.

I am honored to report that my last blog post – Increasing Patient Involvement – was featured on the Parkinson’s Movement website! Thanks for reading, and if you tuned in to find out about brewing beer at home, maybe I’ll get to that one next !

Increasing Patient Involvement

What a busy couple of weeks! We traveled to Bellaire and Traverse City Michigan to visit relatives, spent two days at the Grand Challenges in Parkinson’s Disease Symposium held in Grand Rapids Michigan (more details below) and finished up with a trip to Bay City to visit with more relatives and friends.

In the Bellaire area we celebrated Mara’s brother’s 70th birthday and in Traverse City we helped out her sister at her used book store, The Bookie Joint, in downtown Traverse City (shameless plug). In Grand Rapids we had dinner with Rob and Carol Jones whom we first met at the Kripalu Wellness Retreat last October. We had a great time and caught up on changes to medications, symptoms, etc. since Kripalu.

In Bay City we visited with Mara’s cousins and met up with our friends Karen and Jerry whom we visited in Tucson, AZ in April. As I mentioned in the post about that visit, Jerry was diagnosed about the same time as I was last year. They were great hosts and a highlight was Friday night’s fried perch dinner.

The Grand Challenges in Parkinson’s Disease Symposium was held at the Van Andel Institute and provided a forum for people with Parkinson’s Disease to interact with some of the top medical professionals and scientists involved in Parkinson’s Disease research. The event featured information sessions and presentations aimed at those in the research/medical field, caregivers and people living with the disease. The symposium also included Rallying to the Challenge, a one-of-a-kind patient-centered meeting designed to highlight the many ways people with Parkinson’s disease can impact the clinical trial process and accelerate access to new Parkinson’s disease treatments.

The Rallying to the Challenge was kicked off by Tom Isaacs, PwP and co-founder of the Cure Parkinson’s Trust, a UK based Parkinson’s research organization. Tom was diagnosed with early onset PD 20 years ago at the age of 27 and has been an active advocate for Parkinson’s research since then. His presentation to the 250+ neuroscientists and medical professionals and the 100+ PwP and care partners titled “The Urgent Unmet Needs of People with Parkinson’s” was inspiring and he received a standing ovation from the entire audience.

Tom noted that the one constant he has seen in PwP’s is if they are involved in any constructive way they benefit from an improved sense of well being and fulfillment. Saying “We must make patient involvement the rule, not the exception”, he went on to set out the different unmet needs at the different stages of the disease. You can watch a prerecorded video of the speech here it is about 16 minutes long but it will be worth your time.

Patients and caregivers then joined Tom Isaacs and a panel consisting of PwP’s, representatives from major organizations including National Parkinson’s Foundation, Michael J Fox Foundation, Parkinson’s Disease Foundation, Parkinson’s Action Network, The Davis Phinney Foundation, The Brian Grant Foundation, Parkinson’s Movement, and The Cure Parkinson’s Trust along with patient advocates from around the world. We went over the results of a survey of PwP’s and researchers about what is needed for successful clinical trials. It was pretty exciting to be involved in this group all focused on one goal, increasing patient involvement.

The issue we brainstormed was how to overcome the fact that only about 5 – 10% of PwP’s participate in trials and up to 30% of clinical trials fail to recruit any participants. The goal was to find ways around the barriers that prevent participation. One of our team members was Brian Grant, a former NBA star who was diagnosed at the age of 36. He made an excellent presentation to the group on the benefits of teamwork.

The next day we rejoined the scientific presentation group and Tom Isaacs and the moderators from the breakout groups made a presentation on what is needed to increase patient engagement and clinical trial participation. Some of the points included getting PwP’s involved at the beginning of the trial so that our concerns are addressed up front, providing additional funding to pay for participants travel costs, and making use of current technology such as Skype so the participant doesn’t have to travel as often. The end goal is to make the process patient driven because with patient involvement more will participate in the trial, they will address patient needs, and they can be completed in a shorter time frame.

The conference was very educational and we added new “family” as we met many more PwP’s and care partner’s from the US, UK, and Canada. We were happy to see Bill Wilkins our fellow panel member from Atlanta on the Rallying to the Challenge team. Meeting Tom Isaacs and many of his panel members was an added bonus as it included many authors of blogs I follow and it was nice to meet them or hear them speak.

I have included a link to an easy to use glossary of the language of PD from National Parkinson’s Foundation under the PD Resources heading in the right hand column. If you do much research into PD you will come across a lot of new words and this link (or Google) will help you decode them.

We are home for a while and one of our goals is to switch my Parkinson’s care to a Movement Disorder Specialist (MDS) at the Vanderbilt Parkinson’s Disease Center in Nashville. They are one of NPF’s Centers of Excellence and only about two hours away from home. Stay tuned for our progress in that endeavor and my foray into brewing my own

On The Road…Again!

Mara and I attended the Partners in Parkinson’s event in Atlanta recently, along with an estimated 650+ other patients with Parkinson’s and their loved ones. We were also honored to serve as panelists during one of the breakout sessions.

Our day started with meeting a couple from Knoxville as we walked to the convention center. We introduced ourselves and agreed to stay in contact since they had not yet found a support group. After getting registered, we enjoyed the complimentary breakfast with a couple from Atlanta and soon selected a table to sit at for the morning presentation, joining a father and daughter from the area. We had already added six people to our support group and the day was young!

Three main topics were covered in the morning moderated by longtime journalist Dave Iverson, a Parkinson’s patient himself, who serves as contributing editor for the The Michael J. Fox Foundation. Each topic was followed by Q & A from the audience. The first topic was The Many Faces of Parkinson’s Disease. Dave questioned three Parkinson’s patients about their diagnoses and the path their lives have taken since, reinforcing the fact that this disease impacts everyone differently. As Dave said “If you have seen one person with Parkinson’s, you have seen one person with Parkinson’s.”

Next up was Seeing a Movement Disorder Specialist: What to Know, Ask and Expect. A Movement Disorder Specialist MDS is a neurologist who has received additional training in PD and other disorders. One of the cool things you can find on the Partners in Parkinson’s website is a searchable database to help you find a movement disorder specialist near you.

Dr. Stewart Factor, Director of the Emory University Movement Disorder Clinic, conducted an “appointment” with a PD patient and his wife. It was an interesting, informative session prompting many of us to realize that our initial consultation may not have been filled with as much information about PD that he was covering.

The final topic was Parkinson’s Research: The Road Ahead where Dave questioned three experts involved in clinical trials and PD research. This was an informative session that engendered many questions from the audience including when to start levodopa, diet, new drugs in the pipeline, clinical trials and others.

After lunch, the breakout sessions were offered twice so you could attend two different sessions. The sessions were Living Well with Parkinson’s, presented by The Davis Phinney Foundation; I’m Still Wondering About…, an opportunity to ask additional questions; and Building Connections with Family, Friends and Community, the one we participated in.You could also browse the Resource Fair where over 20 local organizations and care providers offered information for PD patients.Since we were involved in both of our sessions, we couldn’t attend any of the others but I did hear a lot of positive response about The Davis Phinney presentation.

Our panel included Bill Wilkins, diagnosed 8 years ago and very active in the Parkinson’s community through his organization, The Wilkins Parkinson’s Foundation, and India Pender Martin, whose grandfather was diagnosed when she was three and who is also active in the Parkinson’s community. Our panel was expertly moderated by Claire Meunier, vice president of research engagement for the Fox Foundation.

Mara and I discussed the path we have been following since my diagnosis, how we communicate with family and friends, our trip to Kripalu and why I started the blog. Bill discussed his diagnosis and how he became active in the Atlanta community and across the US. India talked about dealing with her grandfather’s Parkinson’s symptoms at an early age and her desire to find a cure. Then we took questions from the audience. We received positive comments from attendee’s after each session, and I handed out quite a few cards with the blog address — so might pick up a few more readers!

We are glad we accepted the invitation to participate on this panel even though neither of us are fans of public speaking. It became easier for me when Bill said, “I can meet a person with PD and immediately strike up a conversation.” Which is true for us too. We added many new friends to our support group. Partners in Parkinson’s allowed us the opportunity to “strike up a conversation” with fellow people living with Parkinson’s.

At the closing session Dave interviewed Mahlon R. DeLong MD, who just received the Lasker Award for research that led to Deep Brain Stimulation (DBS). They talked about what’s next and the possibility of using DBS to help with balance and gait issues that aren’t solved with the current procedure. I am excited about that since those are my worst motor symptoms.

So that’s what happens at a Partners in Parkinson’s event and if one is being held near you we both recommend attending, you can find the schedule for the remaining events here.

Next…we are in Northern Michigan to celebrate Mara’s brother’s 70th birthday. Our timing is right and we will attend the Grand Challenges in Parkinson’s Disease conference held in Grand Rapids where we will meet up with a couple we met at Kripalu.

Whew this was a long post, thanks for sticking it out to the end and stay tuned for the next post.

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

My Everyday Heroes

Increasing Patient Involvement

On The Road…Again!

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!