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 ...
Parkinson's Disease: Placebo Effect & Dopamine

Parkinson’s Disease: Placebo Effect & Dopamine

Researchers hate the placebo effect, but for many of us with Parkinson’s, placebos help get us through the day. Maybe it’s a vitamin & supplement regimen, or your diet. Maybe there are foods you will or will not eat at particular times of the day. Maybe it’s your art or music. Maybe it’s your exercise routine. Maybe it’s your bicycle. Maybe it’s swimming. Maybe it’s dancing. Maybe it’s meditation. Maybe it’s neurofeedback. Maybe it’s yoga or tai chi. Maybe it’s a sport. Maybe it’s table tennis. Maybe it’s poetry. Maybe it’s your gun therapy. Maybe it’s a red light bucket ...
Parkinson’s Awareness Month is a time to look outward, not inward

Parkinson’s Awareness Month is a time to look outward, not inward

Who decides which disease or cause can lay claim to a month as an awareness month? I’m just curious, because we’re about to enter April, which for some reason is Parkinson’s Disease Awareness Month. It's not that I don't believe that PD deserves an awareness month. My issue is that I feel like a hypocrite. I am so aware of Parkinson's Disease, that I have been completely unaware of awareness months for any other diseases or causes in the past year. Therefore, I think there is no better way for those of us with PD to start Parkinson’s Disease Awareness ...
Targeting PD Tremors with Strength Training: Forearm, Wrist and Grip

Targeting PD Tremors with Strength Training: Forearm, Wrist and Grip

Most of us have tremors in our lower arm and wrist. In this video, we discuss strength training exercises targeting the forearm, wrist and grip ... simple low intensity exercises that are a great way to start the day. The equipment used in this video: TheraBand FlexBar - https://www.amazon.com/TheraBand-Tendonitis-Strength-Resistance-Tendinitis/dp/B000KGOMBC/ Grip Strengthener: https://www.amazon.com/ADMA-Strengthener-Adjustable-Resistance-Rehabilitation/dp/B07DB2QL6M/ Bowflex SelectTech Adjustable Dumbbells - https://www.amazon.com/Bowflex-SelectTech-Adjustable-Dumbbells-Pair/dp/B001ARYU58/ ...
How Much Should I Exercise for Parkinson's Disease? (Video + Presentation)

How Much Should I Exercise for Parkinson’s Disease? (Video + Presentation)

We've created a PowerPoint video presentation detailing exercise recommendations and related research for people with Parkinson's Disease. The presentation slides can be viewed interactively below: This is an embedded Microsoft Office presentation, powered by Office Online. The presentation slides can be downloaded by clicking on the image below: ...
The Unexpected Placebo Effect of PD Volunteerism

The Unexpected Placebo Effect of PD Volunteerism

I'll admit it's an odd question to ask, "Can the action of volunteering and fund raising for PD research improve your Parkinson's symptoms today?" However, I believe that there is an interesting argument for how the action of volunteering and fund raising for PD research not only helps enable research that will benefit Parkinson's patients in the future, but can also improve your Parkinson's symptoms today. Let's call this the unexpected placebo effect of volunteerism ...
Exercise can improve non-motor symptoms of PD (hint: mental & cognitive function)

Exercise can improve non-motor symptoms of PD (hint: mental & cognitive function)

A recent study reminds us that exercise does more than just improve motor symptoms of Parkinson's Disease, such as tremor, gait disturbances, and postural instability. Exercise can improve non-motor symptoms of Parkinson's disease, specifically mental and cognitive function. According to this study: Up to 57% of patients suffering from PD develop mild cognitive impairment within five years of their initial diagnosis, and if they survive more than ten years, the majority will eventually develop dementia. This study reviewed earlier studies of exercise and Parkinson's Disease. They found 5 studies that had significant group size and included cognitive testing. There was ...
The UK study that surgically implanted brain tubes to test a PD treatment (GDNF)

The UK study that surgically implanted brain tubes to test a PD treatment (GDNF)

There’s a lot of talk this week about the Parkinson’s Disease trial in the UK involving a surgery that implanted tubes in patients’ heads (behind the ear) that could be used post-surgery to deliver GDNF (Glial Cell Line Derived Neurotrophic Factor) to the brain. The hope was that this would regenerate dying dopamine brain cells in patients with Parkinson's and reverse their condition. Technically, the study failed to meet its goals. But the press release that came out of the study is a bit more enthusiastic, titled  “New Treatment Offers Potentially Promising Results for the Possibility of Slowing, Stopping, or ...
Cold Turkey - A  Dopamine Agonist Withdrawal Syndrome Story

Cold Turkey – A Dopamine Agonist Withdrawal Syndrome Story

I took more than a year off from updating the Parkinson FIT website...and stopped keeping up with the various PD websites, Twitter, and news feeds. I can’t really say I had a plan, I told myself that I was obsessing a little bit too much about Parkinson’s disease. I figured that I would just go about my life...keeping up the healthier lifestyle and exercise regimen that started after being diagnosed with PD 4+ years ago. All this exercise was time-consuming enough… All in all, it seemed like a pretty good year…not that different from the year before. This spring, I ...
Skiing with Parkinson's Disease

Skiing with Parkinson’s Disease

One of the most frustrating things about Parkinson's Disease is finding yourself unable to do things that you used to enjoy doing. I suppose this applies to aging in general, but with PD, it is premature aging. I was never a great skier, but it was something I enjoyed ...
Running with Parkinson's Disease - Dreams of Flight

Running with Parkinson’s Disease – Dreams of Flight

There was a recurring theme in some of my dreams when I was younger...I'd try to run, but despite my best efforts, I was unable to make any forward progress. It was never a situation where I was running away from something, more like I was trying to run toward something. I'd get frustrated, trying to move my legs faster, but I would seem to be running in place. After some period of frustration, it would hit me…I’d remember that I could fly, I just needed to use my arms. Flying dreams were the best. I'm certain these dreams were ...
Parkinson’s Disease - The Placebo Effect, Genetics and the Placebome

Parkinson’s Disease – The Placebo Effect, Genetics and the Placebome

While traveling back home on a long cross country flight, I got a chance to read a fascinating book, "Suggestible You: The Curious Power of Your Brain to Deceive, Transform and Heal” by Erik Vance. The first few chapters are all about the placebo effect, and how some conditions, such as Parkinson's Disease, are particularly prone to it. In a nutshell, the placebo effect is the big challenge in phases 2 & 3 of a clinical trial for a new drug or treatment. In these so-called double blind studies, there is one group that receives the treatment and another group ...
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