When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

On the Road Again!

Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.

So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.

With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.

Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!

Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.

After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.

This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:

SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.

Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”

I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!

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

Tag: Travel

Parkinson’s Disease Southeast Symposium Coming Soon!

We are on the road to New Orleans for a wedding and the biannual 3M reunion (Mara, Marilyn and Mary Ann), but I wanted to write a quick post about the Parkinson’s Disease Southern Symposium to be held November 13th through the 16th in Spartanburg, South Carolina.

To quote from their brochure, “From November 13 through November 16, researchers, physicians, those living with Parkinson’s disease and caregivers are joining together to advocate awareness about the disease, its affect on the whole person, and issues related to its diagnosis, improved treatment options and better care..” You can view the entire brochure here and even more information is available on their website.

Mara and I will be attending and we urge those of you in the Southeast to attend all or some of this event which will include a talk by Dr Michael Okun, Director of the University of Florida Center for Movement Disorders and Neural Restoration on Friday and The Davis Phinney Foundation Victory Summit on Saturday in Greenville, SC. The events are free but some, like the Victory Summit, require registration which you can do on the website. Many of the events are at the Marriott hotel and they are offering a discount on rooms if booked by October 28th with no deposit required at this link. We hope to see you there!

With a little creative travel planning for this trip, we are AT THE BEACH in Biloxi, MS where we had a nice picnic dinner with a glass of wine and a beautiful sunset. Life is good!

October 24, 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
At the Beach — Again!

I am writing this from the deck of a beautiful home overlooking the Atlantic Ocean on Bald Head Island, NC. Yep, at the beach again!! More about how we got here later in this post.

I have looked at several more clinical trials but again find that I don’t qualify because I am already on medication. It seems to me that communication between Movement Disorder Specialists (MDS) or Neurologists and clinical trial operators could increase trial participants. If the Doctors were aware of the trials being conducted nearby, they could then offer their newly diagnosed patients the opportunity to particpate in the trial before they prescribed a medications. Of course another issue is travel, most of the trials that I have tried to join are at least 200 miles away and the travel costs are usually not covered. In her latest blog post, Soania Mathur MD states “…close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject.” The post goes on to discuss both the logistical and the lack of knowledge issues I have discussed above. The Michael J Fox Trial Finder website does a great job of listing all of the trials in my home radius of 300 miles and they notify me if a new one is added that meets the criteria but the newly diagnosed need to know where to look. Perhaps one or more of the National organizations can develop a simple brochure that can be supplied to MDS and Neurologists for them to hand out or make available to patients. It might be a start?

I was asked this week to be a PatientsLikeMe Research Ambassador. PatientsLikeMe is an online support group I belong to and I had applied to be a member of a research advisory committee they were forming. While I wasn’t selected for the advisory group I was asked to be a Research Ambassador. Per the email ..”Like the Team of Advisors, our Research Ambassadors are being asked to commit to a program that’s designed to put you in the driver’s seat of making research better.” As an Ambassador, I will get special communications each month for the rest of the year about new research initiatives, information about data being collected and how it will be used, and use my blog and other social avenues to share this information with the Parkinson’s community. I have participated in a couple of their research projects already, including the one where I did the voice test over the phone to see if they can track the progress of my Parkinson’s. Sounds interesting and I am looking forward to participating.

We had a great visit with my daughter Holly and grandchildren Charlie and Kayla. The weather was great until the last evening so we got in a lot of boating, tubing, swimming, fishing and stand up paddle boarding along with side trips to the Ripley’s Believe It or Not museum and a couple of rounds of mini golf.

Kayla turned out to be the fisherperson extraordinaire hooking a couple of nice catfish and a bunch of sunfish from the dock. Charlie loved being on the water and riding the tube. Holly and Kayla both enjoyed stand up paddle boarding so much the first time, they went back for more before leaving for home. It was a great visit and a good time was had by all.

We are enjoying our time at the beach in Bald Head Island. The island is reachable by ferry from Southport, NC and once you are here, you travel by foot, bike or golf cart. We have been lucky to spend a week here for the past several summers with my stepson David and his wife Shelly and the two grand kids Breanna and Garrett. This year Breanna is in MN so this is the first time we have been here without her. Garrett always brings along a friend or two, this year he brought along 4 high school buddies and they are having a blast. Dave and Shelly’s friends Mario and Missy have also joined us for the week. It is a great place to just relax, read books, take long walks on the beach and watch the World Cup. I am trying to catch up with all of the magazines I haven’t read since we returned from Florida in early March and produce this blog post. Looks like the blog post will make it, we’ll see about the magazines.

Our friends Mary Ann and Don live nearby in Wilmington, NC so they came over for a day and we had a great time, we hadn’t seen them for almost 2 years so we had a lot of catching up to do. We enjoyed a nice lunch with them and a couple of ‘slow’ rides around the island as one of our golf carts is not super speedy. 🙂

Next up is a visit from my son Ryan and his wife Sarah and grandson Julian and his half brother Trysten for the Fourth of July, look for more fun on the lake in the next post.

June 20, 2014

Anniversaries abound!

What I Did During My Summer Vacation (so far)!

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

Parkinson’s Disease Southeast Symposium Coming Soon!

On The Road…Again!

At the Beach — Again!