Happy Thanksgiving Holiday!

It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

Reminder number one: November is National Caregivers Month. Yes the month is about over but I know that you, like me, are thankful for your care partner(s) every day of the year. Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD. Download load a copy at this link.

Reminder number two: Tuesday the 28th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

Item of interest number one: This article Neurological disorders – including Parkinson’s – are leading source of disability globally points out that PD is becoming pandemic and we must take action to find a cure. This summary is worth the few minutes it will take you to read.

Item of interest number two: The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure. Click on the link above to get more information and join us.

Item of interest number three: The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan. Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC. Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane. They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally. Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate. Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

On this Thanksgiving day 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 occasional posts. Thank you all and Happy Thanksgiving!

A Month of Change

September has been a month of changes including:

We moved from Tennessee to Florida
Our house in Tennessee suffered a catastrophic flood due to a broken pipe
Hurricane Irma also moved to Florida
I moved this blog to a new host and a new platform and
Summer left and Fall arrived

We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners. We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again. Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day. We found the house to be almost a complete remodel with water damage through out both floors. We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company. I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available. Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too. As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress). As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist. I will keep at it and all should be functional soon.

In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address. I think this was a one time event and future emails will only be sent when I have a new post. If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed. Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow. Sounds OK to me!

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

The Sarasota Experiment Results Are In!

As I noted in the previous post, it had been over four months since I posted anything at all and a busy four months they were. In April we decided the Sarasota experiment was a success and that we should sell our Tennessee home and move to Sarasota full time. In Sarasota I am able to pedal for Parkinson’s twice a week, play tennis two to three times a week, attend a Dance for PD class once a week along with yoga, tai chi and general exercise classes. And I don’t have to travel 45 minutes to attend any class, everything is within a 10 – 15 minute drive which makes it easy to ‘get up and go’ exercise. So I have updated the cover photo to a great beach sunset with two dolphins enjoying the view and made some modifications to my profile over there on the right.

More and more studies are showing that exercise is one of the keys to living with PD (or just living in general). While it seems like I am taking on more that I should, I find instead that the more I take on, the better I am able to deal with my PD symptoms. This has certainly proved out during the 3 months we have been in Tennessee, my exercise routine dropped to almost nothing and I can tell my symptoms are worse.

So we finished April in Sarasota with a visit from our friends Tom and Marilyn. We enjoyed sunsets on the beach, nice walks in the complex where we live, touring the Ringling estate and Selby Gardens and kayaking through the mangrove tunnels near Lido Key.

In early May we returned to Tennessee and started the process of getting the house and grounds ready to sell. We also had a visit from my brother-in-law Mike and my sister Marcia and we took a trip to the Grand Ole Opry in Nashville, a bear sighting trip through Cades Cove in the Smokies (yep we saw some bears) and a lot of fishing!

In June we worked on the home and squeezed in a trip to Bald Head Island with Dave and Shelley and Breanna and Garrett. By the middle of June we were ready to put the house on the market and we listed it on a Friday and sold it on Monday, just before the first of the summer visitors arrived! At the end of the month, Dale Monica and Angelina and Ariana arrived to celebrate the fourth of July, a birthday or two and the sale of our house. And on July 4th Ryan Sarah Julian and Trysten arrived to celebrate the holiday and spend some time on the lake.
After the first round of visitors left, Holly, Paul, Charlie and Kayla arrived for a visit at the end of July and we enjoyed the lake and took a trip up to Gatlinburg for lunch and mini golf.

We had a great time with everyone and are glad everybody got a final visit to the Lake Cottage. At the end of the month Mara and I went to Townsend to celebrate our 27th wedding anniversary and my 71st birthday. It was a great 3 days of R and R after a hectic couple of months getting ready for the house sale and visitors.

Since the Townsend trip we have been packing and deciding what to sell and what to keep. This weekend we will hold an estate sale and the house will be empty. We will stay until the 22nd since we are on the direct path for the full eclipse on the 21st. Then we will make a quick trip to West Virginia to visit granddaughter Breanna before returning to Sarasota by the 1st of September.

July 24th marked the 4 years since being diagnosed with PD and I do believe that I was doing better while maintaining my Sarasota exercise routine and I am looking forward to gearing back up to see if I notice a difference. I visited my PD doctor last week and he was pleased with my overall condition and he recommended no change in medication levels, just continue to exercise.

August 6th also marked 4 years publishing this blog and, once again I could make my usual promise that I will do better and post more. But since all that does is set high expectations for you and feelings of impending doom for me, I’m going with no promise this year. After all It Is What It Is!

Speaking of exercise, last week the NPR show The Peoples Pharmacy aired a show about Pedaling for Parkinson’s and the advantages of exercise in general. The show includes an interview with Kathy Helmuth, who is the instructor of our Pedaling class in Sarasota along with interviews with Dr. Jay Alberts who discovered the benefits of “forced exercise” for PD patients and Dr.Jordan Metzel who discusses the benefits of exercise for us all. You can download or listen to the podcast here.

So that is a condensed version of pretty much all that has been happening for the last four months. Next time I will be posting from Sarasota and, hopefully, talking about changes we have seen since getting back into a regular exercise routine. Until then, thanks for reading and for sticking around during my 4 month hiatus.

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

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!

Tag: Parkinson’s Disease

Back Home Again…but not for long!

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!

September 6, 2014
West Coast Travels

Hello from San Diego! We have had a wonderful trip to the Southwest and West Coast. We spent the first couple of days in Tucson with Karen and Jerry, friends from Bay City, MI. Jerry was diagnosed with Parkinson’s at about the same time as I was so we spent some time comparing our different symptoms, medications, and such. As always, I found it interesting how each of us experience different PD symptoms, what a crazy disease.

We explored Tucson and the surrounding area for a couple of days before leaving for San Diego. Karen and Jerry were excellent hosts and we had a great time hiking in Sabino Canyon, walking around downtown Tucson and enjoying the happy hour at the Ritz Carlton at Dove Mountain where we could hear echos from a flutist playing Indian flutes across the canyon from the outside patio.

We left Tucson and drove to San Diego where Ryan, Sarah and Julian were in the process of moving out of their apartment and into their new residence a few blocks away. They had just started the move and we got to help with emptying boxes, putting away household items, etc. and still found time to attend a couple of Julian’s Lacrosse games, go to the beach for sunsets and nice walks, and visit with Sarah’s sister Allison and her husband Kevin and their new little baby, Jack, born two days before we got here. We have enjoyed several great meals, a trip to San Clemente, and a great lunch at the Stone Brewery World Bistro – Liberty Station in San Diego. It has been a great visit and we are glad to enjoy their company and to help them with the move.

I’ve been on the new increased medication dose for about a week and a half and have seen good improvement with my gait and balance. Also I haven’t had problems with fatigue despite the busy days. I have been keeping up with my research and saw an interesting article today about the benefits of acupuncture for balance and gait problems. It certainly sounds promising and worth looking into further. I applied for two clinical trials last week but didn’t meet all of the criteria for either one this time around. Lack of research participants is a big problem and I am registered with the Michael J Fox Trial Finder to get notifications of any new trials that I might qualify for so maybe next time. I urge all you PWPs out there to register, we need to support the research being done to defeat Parkinson’s.

We are off to Sierra Vista, AZ next for a few more days of visiting with friends before we return home. In the meantime, don’t forget it is still Parkinson’s Awareness Month. This video by Davis Phinney, former Professional and Olympic bike racer with Parkinson’s, is inspirational and worth watching. It is about 23 minutes long and was filmed at one of his Victory Summits that he holds around the country. You can view the video here . Until next time, remember It Is What It Is!

April 26, 2014
Hanging at the Beach!

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! 🙂

January 20, 2014

Thanksgiving

A Month of Change

The Sarasota Experiment Results Are In!

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

Back Home Again…but not for long!

West Coast Travels

Hanging at the Beach!