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.

Well it has been one year since the inception of this blog and an interesting year it was, as outlined in my last post. And as promised this post will contain some nerdy, but kind of fun, information collected by Blogger during the year. Blogger is the Google platform I use to maintain the blog. They kindly keep track of how many times a page is viewed, the approximate location of the viewer and the ten most viewed posts among other things.

Page views:

The number of page views was about 2200 for the period 8/6/13 – 8/4/14 or about 180 views a month but suddenly the last post went viral! The National Parkinson’s Foundation (NPF) mentioned my last blog post on Twitter and Facebook on Tuesday and suddenly the blog received almost 700 pageviews on 8/5/14 alone! So now the number of views as of this writing is 3055! Thank you NPF and welcome new readers, I hope you enjoy reading It Is What It Is.

Reader location:

The top ten reader locations are shown in this graphic.

Not much to say about this list, as one would expect, most viewers are in the United States. The top five States are Colorado, Tennessee, Maine, Florida and California. A number of readers from other countries are also following the blog which is pretty cool!

Ten most viewed posts for the year:

Of course the winner for this year is the post which was mentioned by NPF, What a Year!. The next most popular was the post about visiting the University of Florida Movement Disorder Clinic which is carefully disguised as a post about Hanging at the Beach! Others making the cut include Cognitive Training about playing Lumosity with PD, Team about Partners in Parkison’s, the Kripalu Wellness Retreat post, the post about Staying Motivated to Exercise and Support about our visits to the local support groups.

You can view these posts and others from the Popular Posts listed just below my profile or from the Blog Archive,located near the bottom of the right hand column.

So there you go, some nerdy but interesting (well to me anyway) information about the blog over the past year. Again I want to thank all of you for your support and hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I plan to continue staying on top of current Parkinson’s Disease research and I will continue to look for a clinical trial that I can join. I am quite aware of what “might” happen in the future but that doesn’t mean I have to give in, I will continue to fight and maintain a positive attitude because I believe we will beat Parkinson’s!

Category: Support Groups

A Year of Blogging

Well it has been one year since the inception of this blog and an interesting year it was, as outlined in my last post. And as promised this post will contain some nerdy, but kind of fun, information collected by Blogger during the year. Blogger is the Google platform I use to maintain the blog. They kindly keep track of how many times a page is viewed, the approximate location of the viewer and the ten most viewed posts among other things.

Page views:

The number of page views was about 2200 for the period 8/6/13 – 8/4/14 or about 180 views a month but suddenly the last post went viral! The National Parkinson’s Foundation (NPF) mentioned my last blog post on Twitter and Facebook on Tuesday and suddenly the blog received almost 700 pageviews on 8/5/14 alone! So now the number of views as of this writing is 3055! Thank you NPF and welcome new readers, I hope you enjoy reading It Is What It Is.

Reader location:

The top ten reader locations are shown in this graphic.

Not much to say about this list, as one would expect, most viewers are in the United States. The top five States are Colorado, Tennessee, Maine, Florida and California. A number of readers from other countries are also following the blog which is pretty cool!

Ten most viewed posts for the year:

Of course the winner for this year is the post which was mentioned by NPF, What a Year!. The next most popular was the post about visiting the University of Florida Movement Disorder Clinic which is carefully disguised as a post about Hanging at the Beach! Others making the cut include Cognitive Training about playing Lumosity with PD, Team about Partners in Parkison’s, the Kripalu Wellness Retreat post, the post about Staying Motivated to Exercise and Support about our visits to the local support groups.

You can view these posts and others from the Popular Posts listed just below my profile or from the Blog Archive,located near the bottom of the right hand column.

So there you go, some nerdy but interesting (well to me anyway) information about the blog over the past year. Again I want to thank all of you for your support and hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I plan to continue staying on top of current Parkinson’s Disease research and I will continue to look for a clinical trial that I can join. I am quite aware of what “might” happen in the future but that doesn’t mean I have to give in, I will continue to fight and maintain a positive attitude because I believe we will beat Parkinson’s!

August 7, 2014
Support

When I was first diagnosed, I had mixed feelings about attending a support group. I wondered if we sat in a circle and I said “Hi, I’m Tom and I have Parkinson’s” (Hiiii Tom). Was there a 12 step program for dealing with Parkinson’s? 😉 And I was worried that seeing PWP’s with a wide range of symptoms would be like seeing my future. But as I learned more about Parkinson’s I realized that it is a progressive disease that affects everyone of us in different ways and no two seem to be alike. And, as we learned at the Kripalu retreat and in Florida, it is helpful to meet other PWP’s and caregivers to trade experiences, share coping strategies, and for a sense of community

So, last week we attended two local support groups, The East Tennessee Parkinson’s Support Group and the local Kingston Support Group. Both groups meet at a local church, both meetings included lunch and both provided us with a positive experience.

The East Tennessee Parkinson’s Support Group, PK Hope is Alive, met on Tuesday in Oak Ridge. There were probably 60 – 70 people in attendance pretty much evenly divided between PWP’s and caregivers. We opened with some voice exercises led by one of the PWP which included some singing. I didn’t have a signing voice before Parkinson’s and it sure hasn’t improved, but it was fun. After lunch they introduced Dr.Scott Wylie Ph.D from Vanderbilt University Movement Disorders Clinic, a National Parkinson’s Foundation Center of Excellence. He gave a fascinating presentation on “Cognitive Changes in the Parkinson’s Patient”. He and his research group are doing research about the effect too little or too much dopamine can have on cognitive functions.

Dr Wylie pointed out that James Parkinson, in his 1817 ‘Essay on the Shaking Palsy” described the disease as ” Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forward, and to pass from a walking to a running pace: the senses and intellects being uninjured.” (Underline added) He expects that last bit would be revised if James Parkinson were alive today.

While most of us were aware that lack of dopamine is at the root of our motor symptoms, his research has shown that it may also have an impact on our cognitive symptoms too. I hope to get a copy of his presentation and will provide more information in a later post. After the presentation, he answered questions from the group which meant we didn’t get an opportunity to break out into smaller groups of PWP’s and caregivers for discussion but the meeting was fun and we plan to attend again.

The local Kingston Support Group met on Wednesday. We first heard about this group during a Tai Chi lesson when someone mentioned that they were aware a group met in the same space but didn’t know the day or time. So I had planned to call the church when we returned from Florida to get the information but, as luck would have it, the Monday edition of our local paper made mention of the meeting’s day and time. We found out later that they had been trying to get it published for quite awhile and Monday was the first time it was finally inserted in the community calendar page.

This group was quite a bit smaller than the Oak Ridge group. There were about sixteen attendee’s including another couple who were there for the first time after seeing the mention in the paper. We sat around three tables and had a great opportunity to discuss symptoms, medications, exercises and care giving tips while enjoying lunch. After lunch we had a short presentation by the founder of the group who is a speech pathologist and had just returned from a conference. She gave us some tips on how to stand erect and a simple stretching routine that will strengthen the neck muscles and help prevent problems with swallowing. Again an interesting and informative meeting and we will attend again.

So I didn’t have to announce my problems to the group(s) and I didn’t see my future, but I did get a lot of good information and a chance to meet other PWP’s and caregivers and exchange information.

We have been working at keeping up the exercise routine since we have been home and are doing pretty well, averaging about an hour a day. We continue to walk or ride the bike and try to include either Tai Chi or Yoga routines everyday. We purchased another Tai Chi DVD that is more advanced and not quite as easy to follow but we are getting there. Yoga continues to be difficult with my stiff muscles but I know continuing it will help me to gain flexibility and it will get easier (I hope).

April is Parkinson’s Awareness Month and I hope to post informational items as the month progresses. We will be walking in the East TN Parkinson’s Walk on April 5th. This walk is the local version of the Parkinson’s Unity Walk held in NYC April 26th. One hundred percent of the funds raised are donated to Parkinson’s research foundations. You can find out more about the walk by clicking here or if you wish to support our team, you can click here.

April is also Autism Awareness Month, another cause that is important to me, so next month’s posts should be chock full of information!

March 25, 2014
Kripalu Wellness Retreat

We have returned from a most informative and relaxing week at the Kripalu Center for Yoga and Heath. The Healthy Living Immersion Program conducted in conjunction with the National Parkinson Foundation was absolutely amazing.

This wellness retreat for recently diagnosed PWP’s and their caregivers included sessions with a leading Movement Disorder Specialist, along with sessions about exercise, relationships, nutrition, and resilience led by experts in the field. And we had various yoga, yoga dance and meditation sessions in addition to the yoga offered daily at Kripalu. Oh and did I mention the food? We enjoyed wonderful healthy meals every day in the cafeteria all made from organic and local foods.

I will go into more detail in the next post, but first what is Kripalu? Seems like a simple question but I don’t think you can fully understand the Kripalu experience until you spend some time there. Here is part of the description from the Kripalu website:

Kripalu Center for Yoga & Health is a nonprofit educational organization dedicated to empowering people and communities to realize their full potential through the transformative wisdom and practice of yoga. For more than 30 years, Kripalu (kri-PAH-loo) has been teaching skills for optimal living through education for the whole person: body, mind, and spirit. (Emphasis added) It is the largest and most established retreat center for yoga, health, and holistic living in North America.

While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…” As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat.
One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s. There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with. We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.

Without a doubt this was the best gift we could have given ourselves at this time in our lives. I can’t say enough good things about our experience but I’ll try in the next post 🙂

October 30, 2013

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

Category: Support Groups

A Year of Blogging

Support

Kripalu Wellness Retreat