Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!

Today is Parkinson’s Awareness Day!

The new symbol for PD Awareness is The Spark. Developed by a collaboration of organizations in over 80 countries, The Spark will mobilize our community and Spark change!

“This World Parkinson’s Day, we’re calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. We can break the stigma around our disease, lead the call to fund medical breakthroughs and together we can put Parkinson’s in the past.”
PD Avengers website 4 -11-2022

Click here to read more about The Spark on the PD Avengers website and view the actions being taken to grow Parkinson’s Awareness.

Also in support of PD Awareness Parkinson’s Life, the newsletter of the European PD Association, is Busting Parkinson’s disease myths with a new infographic to call attention to just four of the misconceptions people have about Parkinson’s Disease.

As pointed out in the book “Ending Parkinson’s”, PD is epidemic and growing faster every year.

There is currently no cure for Parkinson’s Disease. Research must be funded to find a cure.

Parkinson’s can happen at any age – support research to find a cure!

This myth needs to be busted!! Tremor is one of the more visible symptoms of PD but not all of us have tremor. Instead we deal with stiffness, uneven gait, and balance issues and more, plus a multitude of non motor symptoms such as sleep issues, fatigue, pain, constipation, drooling, soft voice and tiny handwriting.

If you haven’t joined PD Avengers, please click here and add your name to the cause. You don’t have to be a PwP to join and your support will help SPARK awareness of Parkinson’ s disease!

It’s Giving Tuesday!

A quick reminder that tomorrow is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause. Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities. It is a great opportunity to make a difference.

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

Nine Years

Today is Parkinson’s Awareness Day!

It’s Giving Tuesday!

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!