Every Day is Opening Day

Every Day is Opening Day

I decide how I will live life to the fullest despite Parkinson’s disease. I control my thoughts, which in turn control my emotions, which in turn control my actions. Video transcript: This is not a Parkinson's dance class. There’s not even music. It's a makeshift medical clinic in Uganda. Many of these people or family members will be diagnosed with Parkinson's or something else. Yet they sing and dance. Genuinely. Joyfully. If they're able to be joyful despite their situation, I can damn sure be joyful in mine. Minds are powerful. There's power in giving. When felt, something about the ...
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 ...
PD + ED - An Awkward Conversation About PD & Male Sexual Health

PD + ED – An Awkward Conversation About PD & Male Sexual Health

Male sexual health is an awkward topic to discuss, but I feel compelled to share this, because for some people this information may be extremely helpful. One of the most unusual facts that I learned at PD Summer School last week is that men with Parkinson's are sometimes concerned about nocturnal and morning erections. It was explained that these are a normal occurrence, and that there is more cause for concern if you are not experiencing them. What? Well, let's start with why someone might be concerned about this issue in the first place. According to various studies, somewhere between ...
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 ...
PAIN: Explaining Why Changes To RLS Treatment Could Be Significant For Parkinson’s Pain

PAIN: Explaining Why Changes To RLS Treatment Could Be Significant For Parkinson’s Pain

If you have Parkinson’s disease and pain or discomfort that interrupts your sleep, then I think I have some fresh insight, and for some, something to discuss with your doctor. (I can’t believe I’m writing an article to explain another article that I wrote, but I’m still processing a lot of this myself.) Restless Leg Syndrome (RLS) is a horribly misleading term for a condition that is estimated to affect 5% of the U.S. population. The branding, at least for my mind, connotes a playful condition, when it is actually a painful condition at worst and a sleep-depriving condition at ...
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 ...
Why Hope Is Important to Living Well With Parkinson’s

Why Hope Is Important to Living Well With Parkinson’s

A friend forwarded me a video of an excellent inspirational and entertaining commencement address by legendary college football coach Lou Holtz. On the surface, it has nothing to do with living with Parkinson’s. He does not have PD, and he was addressing newly minted college graduates ready to take on the world. But when he said the following, I felt like he was speaking to me directly, right here and now: You have to have something to hope for, something to dream. And even though you’ve done great things so far, what’s going to happen now? I think the coach’s ...
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 ...
Low Vitamin D Associated With Increased Falls and Insomnia in PD

Low Vitamin D Associated With Increased Falls and Insomnia in PD

Vitamin D is another nutrient where deficiency and lower levels of the nutrient may be associated with worsening Parkinson’s disease symptoms. It may be a good idea to ask your doctor to include Vitamin D checks to your regular blood tests. A study published in the journal  Acta Neurologica Scandinavia reports that patients with PD had significantly lower Vitamin D levels relative to healthy controls. The study included 182 patients with PD and 185 healthy controls.  Most concerning was that PD patients with lower vitamin D levels had a significantly higher frequency of falls and insomnia. More information: Hui‐Jun Zhang et al, Relationship ...
USC Develops Virtual Reality Application for Parkinson's Physiotherapy

USC Develops Virtual Reality Application for Parkinson’s Physiotherapy

Virtual Reality (VR) technology offers interesting possibilities for Parkinson's disease therapy. University of Southern California engineers are teaming with researchers and VR game designers to help Parkinson’s patients walk steadily with confidence, creating a VR application called Overcome. Traditional physiotherapy is centered around strength training, stretching, and movement practice, usually in a clinic setting. However, studies have shown that activity performed in the context of the environment, like say, stepping over an obstacle, aids long-term retention in motor skills far more than simply being told to lift one’s foot. This game, in an immersive virtual reality setting, offers the player ...
"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? ...
My Last 5% Are Giving Me 110%

My Last 5% Are Giving Me 110%

Conventional wisdom holds that far more than half of my dopamine-producing neurons were dead by the time of my Parkinson's diagnosis in 2008. I'm guessing that death toll has risen to about 95% now. The remaining 5% (+/-) of my dopamine neurons probably don't like me much. I’m not sure they really understand that Parkinson’s isn’t my fault, and I suspect they hold me responsible for not taking care of 95% of their friends and colleagues...not to mention the increased workload. Regardless, I like all of my body parts to give me 110%, especially my last 5% of dopa neurons ...
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 ...
"My person with Parkinson’s won’t do anything. I can’t get them to exercise, and I don’t know what to do."

“My person with Parkinson’s won’t do anything. I can’t get them to exercise, and I don’t know what to do.”

The Davis Phinney Foundation (DPF) has an article on their website that is an interesting read. Apparently, one of the most common questions they receive from friends and care partners of people with Parkinson’s is this: "My person with Parkinson’s won’t do anything. I can’t get them to exercise, and I don’t know what to do." If that is the situation that you find yourself in, I can appreciate the sense of desperation and the desire to help. However, if you truly want to help, begin with some self-examination. If your friend or partner overhears you making a statement like this, you may actually ...
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 ...
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