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!

Tag: Travel

Happy Thanksgiving!
Just a quick post wishing everyone a Happy Thanksgiving from Seattle. I have much to be thankful for this year including:
- making a change to a Movement Disorder Specialist who recommended a medication change that resulted in a great reduction of my symptoms;
- and that improvement allowed me to increase my exercise time which also helped to reduce rigidity and increase my mobility;
- and the increased mobility gave us a chance to travel to visit family and friends across the country;
- and I got to fish almost every day I was home without having to sit down after 15 minutes to rest!
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!
November 26, 2015
Catching Up

We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!

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

November 15, 2015
The Busy Month of May

Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.

First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.

The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.

It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)

We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.

We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.

Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.

And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.

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

May 25, 2015