First a word about the new “Resources for PD” tab above this (or any) post. I have added a page with links to the major organizations that provide PD support. Every one of them can provide a wealth of information for patients and caregivers and most provide both web based information or you can call their 800 number for assistance. By no means is this a complete list and I plan to update the list as I find new sources but I hope it will be beneficial, whether you are newly diagnosed and looking for as much information as you can find or you just have a question about a new symptom. Check it out when you get a chance. And yes the list of blogs I follow is still coming, soon I hope 🙂

We have returned from a great trip to Colorado, Oregon and Washington to see family and friends. During our short Colorado visit we saw daughter Holly and the grandkids, celebrated grandson Charlies 15th birthday and had lunch with my sisters and my nephew Michael and his wife, Kelsie, whom we hadn’t seen in several visits. Michael is a wonderful nature photographer and you can check out his work at Timberline Images. We also met other friends for breakfast, lunch, or dinner so it was a packed few days before we flew on to the Pacific Northwest.

Upon arriving at the Seattle airport, we drove to Prineville, Oregon to meet up with our close friend Ed who has wanted us to visit for years. He lives on a hillside with a beautiful view of the surrounding area from a large deck. We were treated like royalty as our visit included a steak and elk dinner on the deck with some of Ed’s friends, a fun dinner at The Red Martini and a massage! The massage was wonderful and loosened up my back and neck plus I had a good conversation with the therapist about Parkinson’s and rigidity, you know me, always spreading the word 🙂

We then returned to Seattle for a fun week with our two youngest grand children Angelina and Ariana, oh, and their parents, Dale and Monica. We had a wonderful time with the kids during the last week of summer before school started. We again were treated like royalty, enjoying many fine meals, taking the girls shopping for school clothes, and Dale and I might have hit a brew pub or two 🙂 Best of all, we had time to visit and enjoy each others company. It was a good time and even the Seattle weather was great.

This was my second trip across multiple time zones since my diagnosis. Strangely, I found that gaining the two hours on the outbound trip to Colorado affected my fatigue level on the next day more than I would have expected. I tried to take my medication every six hours on the travel day, without regard to the actual time of day but the next day I was wiped out by early evening. Just before we left I visited the neurologist and he doubled my Mirapex dose to 1.5 mg three times a day, so that may also have been a factor. The one hour time change to the Northwest didn’t have any noticeable affect and I again tried to keep taking the medication 6 hours apart. Flying home where I lost 3 hours did not seem to have the fatigue effect either but we didn’t have visits and dinners etc. to attend the next day so that may be the difference. I did make sure I had my Aware in Care kit (available here from NPF) and extra medication in my carry on, just in case.

Next week, Mara and I will attend the Michael J Fox Foundation/AbbVie Partners in Parkinson’s event in Atlanta where we will be on the panel for a breakout session entitled ‘Building Connections with Family, Friends and Community’. Topics will include how we dealt with the diagnosis, how we communicated with family and friends and what we have done to connect with the Parkinson’s community. We are excited to participate but at the same time we are a bit nervous as we understand that they are expecting over 600 attendees! By the way, there is still time to register for this event if you are near the Atlanta area, or for one of the six remaining events held around the country, check the website link above for details. I will write a blog post devoted to the event and our participation on the panel so stay tuned!

A Year of Blogging

Well it has been one year since the inception of this blog and an interesting year it was, as outlined in my last post. And as promised this post will contain some nerdy, but kind of fun, information collected by Blogger during the year. Blogger is the Google platform I use to maintain the blog. They kindly keep track of how many times a page is viewed, the approximate location of the viewer and the ten most viewed posts among other things.

Page views:

The number of page views was about 2200 for the period 8/6/13 – 8/4/14 or about 180 views a month but suddenly the last post went viral! The National Parkinson’s Foundation (NPF) mentioned my last blog post on Twitter and Facebook on Tuesday and suddenly the blog received almost 700 pageviews on 8/5/14 alone! So now the number of views as of this writing is 3055! Thank you NPF and welcome new readers, I hope you enjoy reading It Is What It Is.

Reader location:

The top ten reader locations are shown in this graphic.

Not much to say about this list, as one would expect, most viewers are in the United States. The top five States are Colorado, Tennessee, Maine, Florida and California. A number of readers from other countries are also following the blog which is pretty cool!

Ten most viewed posts for the year:

Of course the winner for this year is the post which was mentioned by NPF, What a Year!. The next most popular was the post about visiting the University of Florida Movement Disorder Clinic which is carefully disguised as a post about Hanging at the Beach! Others making the cut include Cognitive Training about playing Lumosity with PD, Team about Partners in Parkison’s, the Kripalu Wellness Retreat post, the post about Staying Motivated to Exercise and Support about our visits to the local support groups.

You can view these posts and others from the Popular Posts listed just below my profile or from the Blog Archive,located near the bottom of the right hand column.

So there you go, some nerdy but interesting (well to me anyway) information about the blog over the past year. Again I want to thank all of you for your support and hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I plan to continue staying on top of current Parkinson’s Disease research and I will continue to look for a clinical trial that I can join. I am quite aware of what “might” happen in the future but that doesn’t mean I have to give in, I will continue to fight and maintain a positive attitude because I believe we will beat Parkinson’s!

What a year!

It’s is a time for anniversaries, first and foremost, Mara and I celebrated our 24th wedding anniversary with a trip to a cabin in the Smokies for some R and R and a wonderful dinner at a new restaurant we found nearby. We had a great time and came home rested and relaxed in time for a nice pontoon ride on the lake for my birthday.

Last week was also my one year anniversary as an official Person with Parkinson’s. A lot has happened in the last 365 days which somehow included a lot of beach time! I have researched Parkinson’s, met other PwP, both in person and on the web, took up Yoga and Tai Chi, and started this blog. I have alarms set on my watch and my phone to remind me to open the little pill container I carry with me at all times and take my medication timely. I have been to the University of Florida Movement Disorder Clinic to experience a multidisciplinary and patient centered approach to dealing with PD (highly recommended) and will return next winter for a follow up visit. I chronicled that visit in this blog post.

We attended a week long retreat with about 70 other PwP and caregivers sponsored by National Parkinson Foundation at Kripalu where we had a great opportunity to share symptoms and how we were dealing with our diagnoses. We heard from professionals who provided us with information and ideas, plus it was my first experience with yoga. We stay in touch with many of the other attendees via email and Facebook and I highly recommend attending this retreat if you are within 5 years of being diagnosed, check out the NPF website for more information and dates for this year’s retreat. Again you can read more about it in this blog post from last year.

The most important thing that has happened is being on the receiving end of endless support from my family, my friends, other PwP I have met, support group members, readers of this blog, and other bloggers and Twitter followers. I can’t say thank you enough for all of the support that has flowed my way since my diagnosis. It is amazing and I am humbled beyond words.

If you read other blogs by PwP you will notice that we often talk of the downsides to having Parkinson’s but we also talk about how the diagnosis also opens new doors and you meet new friends and your outlook becomes what positive actions can I take to beat this disease. As Michael J Fox notes in this graphic, “..something is what it is and.there’s got to be a way through it”. Again thanks to all of you for supporting me in trying to find that way and maintain a positive attitude.

Speaking of new doors opening, in a previous post, I discussed the new Partner’s in Parkinson’s, a joint effort with the Michael J Fox Foundation and AbbVie, a drug company. They are holding events around the country and we signed up to attend the event in Atlanta in September. Since that post we have been contacted by the Foundation and asked to participate in a break out session called ‘Building Connections with Family, Friends and Community’ which is focused on how the entrance/existence of PD has influenced the way we navigate and build relationships with others and how it has driven us to take action to get involved in making a difference for PD. It will be a moderated discussion with Q & A and we will be on the panel with three others with a connection to Parkinson’s. We are looking forward to it, hopefully it will not be a soft voice day for me. 🙂

Next week this blog will be one year old and I plan to have a short post to celebrate that anniversary on or around August 6th that will include some nerdy statistics about number of visitors and stuff like that, see you then.

Tag: Parkinson’s Disease

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
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 !
October 14, 2014
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.

September 19, 2014

Back Home Again…but not for long!

A Year of Blogging

What a year!

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: Parkinson’s Disease

Clinical Trial Needs, Southern Symposium and NOLA!

My Everyday Heroes

On The Road…Again!