Hard to believe the year is almost over! It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule. In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.
Happy Holidays!
Tom and Mara
Tuesday, December 1st is Giving Tuesday. Black Friday is over and Cyber Monday is almost over and Tuesday will be a great opportunity to take some (or all) of the money you saved this weekend and give back by making a donation to a Parkinson’s Disease organization or another cause of your choice. As in past years, many charitable organizations have a matching plan that will double your Giving Tuesday donation for double the benefit.
In case you need a little inspiration, I am reposting the following article “What is a Parkie? And Why are They so Expensive?“. This article was written by Alan Zimmerman vice president of the East Tennessee Parkinson’s Support Group and posted on their website, PK Hope is Alive . Alan is a strong and active advocate for Parkinson’s research and education. In addition to being Vice President of the group, he is the Assistant Tennessee State Director for the Parkinson’s Action Network (PAN) and a member of the Parkinson’s Disease Foundation (PDF) People with Parkinson’s Advisory Council.
Take some time on Tuesday and support the cause of your choice, There is a lot of exciting news on the research front and our donations can make a difference! Happy Holidays!!
Just a quick post wishing everyone a Happy Thanksgiving from Seattle. I have much to be thankful for this year including:
But most of all I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my wandering posts. I hope I have provided information of value to PwP’s and others through this blog and the Tennessee Parkinson’s Resources site that we started this year.
Thank you all and Happy Thanksgiving!
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.
Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
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.