Progression of PD or Progression of Me?

Progression of PD or Progression of Me?

I used to worry about how much the exercise I did slowed the progression of PD. Not any more. I mostly just want to be the best I can possibly be. I'm more interested in the progression of me. What do I want to do? What can I achieve? And then how will I train to do it? What are you training for? How does Parkinson’s drive you? ...
Sleeping With The Enemy (Parkinson's Disease and Sleep)

Sleeping With The Enemy (Parkinson’s Disease and Sleep)

Sleep disorders are one of the most common problems experienced by people with Parkinson's Disease. A major study concluded that more than 60% of people with PD experience sleep-related difficulties, with this percentage rising based on the length of time living with the disease. Insufficient sleep can severely impact quality of life, and exacerbate other PD symptoms. Like many other aspects of PD, while many people have sleep problems, they do not all have the same type of sleep disturbances. If you want to improve your sleep, it is important to understand the type(s) of sleep disturbance that you experience ...
With Parkinson's, Outcomes Vary. Right the Ship, Captain. (5 Year Crystal Ball)

With Parkinson’s, Outcomes Vary. Right the Ship, Captain. (5 Year Crystal Ball)

“Where do you see me in five years?” I had been waiting a long time to ask that question.  At the top hospitals you don’t just get in next week, next month either. And when your day comes, there are lots of people waiting for their turn to ask important questions.  Doctors have little allotted time. My doctor had already turned toward the door.  My most pressing concern was still untreated. “I know you don’t have a crystal ball, but just some sense of what to plan for? My kids haven’t even started school.” To the doctor’s credit, the response was considered. MD: Five years…You’ll ...
Why Placebos & A Positive Attitude Are More Important Than You Think

Why Placebos & A Positive Attitude Are More Important Than You Think

Please don’t try this first part at home... What if I told you that you could snort saline solution up your nose and it would significantly improve your Parkinson’s disease symptoms? When you inhale the solution, it will work better if you line down, and tilt your head back. Take your time, and release the solution a little bit at a time...at least over 5 minutes, and maybe as many as 10 minutes. And what if I told you that this has already been attempted in a clinical trial, and the improvements measured were clinically significant? There’s only one problem ...
My God, That's a Lot of Basketball (3,000 3-pointers for Parkinson’s Si Buko Uganda)

My God, That’s a Lot of Basketball (3,000 3-pointers for Parkinson’s Si Buko Uganda)

On June, 18, 2019, I spent 21 hours making 3000 3-point baskets to raise money for Parkinson’s Si Buko Uganda, a non-profit creating awareness and serving local community needs. This video provides highlights of the effort. Basketball Therapy & Self-Discovery The words below convey how it feels when I’m playin’ ball.  For me, it’s about love. As life's expanse slowly narrows, I do more of the things I love and less of the things I don’t. Exercising my Love for Playing I love to play; some call this exercise. Exercise must be this, they say. Exercise must be that.  Here are ...
Parkinson’s Disease Summer School 2019 (Lifestyle & Nutrition Secrets of the Positive Deviants)

Parkinson’s Disease Summer School 2019 (Lifestyle & Nutrition Secrets of the Positive Deviants)

Last week, I spent the week at PD Summer School, a full week of Parkinson’s wellness education. Dr. Laurie Mischley has spent the last 2 decades studying lifestyle and nutrition factors associated with either slower (better) or faster (worse) progression of Parkinson’s disease. The goal is to identify and implement positive deviance strategies that can be used to slow Parkinson’s disease progression ...
Beyond Dopamine - Does PD Effect Other Neurotransmitters?

Beyond Dopamine – Does PD Effect Other Neurotransmitters?

Trends in PD research are showing that in addition to Parkinson’s impact on the neurotransmitter dopamine and the dopamingeric system, the neurotransmitter acetylcholine and the brain’s cholingeric system are also impacted. This post reviews recent research (and some very old research that may need to be revisited), and discusses how two vitamins/supplements (Vitamin B12 and Citicoline/CDP Choline) may impact Parkinson’s disease. This should not be considered medical advice. Always consult your doctors and pharmacist about any vitamins or supplements that you are taking or considering. Related: Exhibit A: Yale Study challenges assumptions about PD and acetylcholine Several weeks ago, a ...
Interrupted Sleep: Exploring Links Between Parkinson’s Disease and Restless Leg Syndrome

Interrupted Sleep: Exploring Links Between Parkinson’s Disease and Restless Leg Syndrome

Restless Legs Syndrome and Parkinson’s disease have interesting dopamine connections. Some Parkinson’s pain may actually be restless legs or arms. Could changes in RLS treatment over the past few years be relevant to getting a good night’s sleep with PD? To those unfamiliar with the condition, the terminology "Restless Legs" makes it difficult to accept as the serious condition that it is. Whenever I hear the term Restless Legs Syndrome, my brain thinks "ants in my pants". I picture myself back in elementary school, being forced to sit at a desk, when I’d rather be running around outside.  That is far from ...
Buried Treasure (What Parkinson’s Gave Me)

Buried Treasure (What Parkinson’s Gave Me)

How Parkinson’s gave me a better long-range jumper, a better baseball throwing arm, and a better outlook on life! I was diagnosed with Parkinson’s disease over a decade ago. I was 38. Parkinson’s is chronic, degenerative, and without a cure. Yet, over the last several years I’ve steadily improved my basketball and baseball games, deeply learning my capabilities in the process. Oh, and I also found both peace and purpose through Parkinson’s somewhere along the way! Parkinson’s is a neurological condition with full-body consequences. Most people’s Parkinson's troubles are movement-related. Some are most troubled by what’s referred to as non-motor ...
"Sustainable Exercise" for Parkinson's

“Sustainable Exercise” for Parkinson’s

An article about an exercise research study prompted me to partially rethink my Parkinson’s Disease exercise philosophy. Exercise intensity may slow Parkinson’s progression, but in the long run, exercise sustainability is essential to a better quality of life ...
Food for Thought: Parkinson's and the Gut-Brain Connection

Food for Thought: Parkinson’s and the Gut-Brain Connection

It began with a gut feeling. Every week, another study provides insight into the gut-brain connection, and the possibility that Parkinson’s disease begins in the gut. What does this mean? ...
Control You, Control Your Parkinson's

Control You, Control Your Parkinson’s

What if there’s a way to ensure Parkinson’s never has control over us again? Is this possible? The mind is often our biggest enemy. Alternatively, it can be trained to serve... The thing with Parkinson’s is the loss of control - the slow, constant erosion of execution of our will, and resulting deferral to Parkinson’s. We want to move easily. We can’t. We want to be pain-free. We’re not. We want to sleep well. We don’t. We want to connect with the people around us. We won’t. Controlling Our Own Suffering. When we control our suffering, as opposed to letting suffering ...
PAIN: Does Parkinson's Cause Pain, or Does Pain Make Other PD Symptoms Worse?

PAIN: Does Parkinson’s Cause Pain, or Does Pain Make Other PD Symptoms Worse?

Is pain a symptom of Parkinson’s? Or do the motor symptoms of PD directly or indirectly cause pain? Or is pain a symptom of something else? Arthritis? Aging? Or is pain a result of lack of exercise? Over exercise? Improper exercise form? Improper exercise instruction? Some combination of factors? Those are interesting questions, but more importantly does pain contribute to the severity of other Parkinson’s symptoms? ...
Exercise for Parkinson's Disease - Understanding Exercise Intensity & Forced Exercise

Exercise for Parkinson’s Disease – Understanding Exercise Intensity & Forced Exercise

This presentation explains some concepts regarding exercise for Parkinson's Disease, explaining how exercise intensity is measured and why it matters, and the concepts of vigorous intensity exercise and forced exercise ...
Reconnecting Through Rhythm

Reconnecting Through Rhythm

Parkinson's disease disrupts rhythm. And sometimes PD obliterates rhythm, battering it beyond recognition. But, we don't have to accept it this way. Working to maintain mind-body connections is well worth the effort ... if you call music, dance, sports, games, or the like, effort. I'm learning every day, but I'm grateful to be able to share my approach to coping with PD as of today. Today, now, is all I really have. I hope this video somehow helps ease your Parkinson's burden: ...
Oddities and Opportunities in Movement During Parkinson's Off Periods

Oddities and Opportunities in Movement During Parkinson’s Off Periods

When my PD medication wears off, I struggle. But there are times that I actually enjoy the challenge of moving that I face after 11 years of living with PD. There’s a reason they recommend exercising when your medication is working and you are on. But, I also find satisfaction in challenging my body when the meds wear off. There are a surprising number of ways around my body's persuasive argument that it just can't do what I'm asking it to. Unfortunately, it's rarely easy. Falling can, and sometimes does occur, and I try to learn from it. As the ...
World Parkinson Congress 2019: Best of the Blog Reports

World Parkinson Congress 2019: Best of the Blog Reports

World Parkinson Congress 2019 in Kyoto was educational, inspirational, and a great excuse to visit Japan again. And in 3 years time, it'll give us an excuse to return to Barcelona for WPC 2022. What did we learn this time? I mean, aside from the fact that serving lunch at a Parkinson's Disease conference with chopsticks as the only utensil is a sick and twisted form of torture. We've highlighted some of the best official and unofficial blog reports from the conference: ...
Gut Bacteria Ate My Parkinson's Meds

Gut Bacteria Ate My Parkinson’s Meds

The dog ate my homework, and gut bacteria ate my Parkinson’s meds. I'm glad it wasn't the other way around. In spite of my poor attempt at humor, this is one of the most interesting scientific discoveries related to Parkinson’s Disease so far this year. No, it does not bring us any closer to a cure, but it is of practical significance because it identifies a naturally occurring scenario that can severely limit the effectiveness of levodopa ...
Carbidopa/Laughadopa: One Pill to Rule Them All

Carbidopa/Laughadopa: One Pill to Rule Them All

Someone once told me that laughter was the best medicine. I think it was the claims reviewer at my health insurance provider. Thanks to carbidopa/laughadopa therapy, I can repurpose so many of my Parkinson's symptoms to treat other symptoms, that the worse my PD gets, the better I feel. ‘Off’ time can be repurposed as meditation time. Loss of smell/taste can be useful, if not absolutely essential, in eating healthier. Soft voices give an excuse to shift attention and become better listeners. Periods of freezing can be research/self-analysis of how fear holds us back in other areas of life ...
WPC2019: Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression

WPC2019: Role of Diet and Nutritional Supplements in Parkinson’s Disease Progression

From the perspective of people with Parkinson's, one of the most interesting presentations at World Parkinson Congress 2019 was Laurie Mischley's talk "Is there any evidence that nutrients modify PD?" during the session "The Microbiome and Diet in Parkinson's disease". Dr. Laurie Mischley of Bastyr University is a leading researcher on diet and nutrition as it relates to Parkinson’s Disease. She wrote a book on the topic that was published back in 2009, and has continued to focus on this topic over the decade since. She is currently leading the CAM Care in PD study (Complementary & Alternative Medicine Care in ...
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