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 ...
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 ...
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 ...
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 ...
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 ...
Ray Kennedy Cup: International Parkinson's Football Tournament

Ray Kennedy Cup: International Parkinson’s Football Tournament

Held annually since 2012 in Copenhagen, Denmark, the Ray Kennedy Cup is an international football tournament for people with Parkinson's. Organizers expect this year's tournament on August 31, 2019 to feature 10-14 teams from Denmark, Norway, Sweden, England and Scotland. There is still time to register if you have a team that is interested, with registrations accepted through August 1. (A team consists of a maximum of 10 players, of which 7 can be on the course at the same time. For lack of Parkinson's players, the tournament management may allow up to 2 players without Parkinson's to be used ...
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 ...
"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 ...
Parkinson's Disease Snowflake Analogy v2.0

Parkinson’s Disease Snowflake Analogy v2.0

The Parkinson's Disease is like a snowflake analogy was cute the first time we heard it. But after a few repetitions, it got a bit tired. Thankfully there is another Parkinson's snowflake analogy that is, perhaps, a bit more realistic. Have you heard this one? ...
YOPD = Young Onset Parkinson's Disease

YOPD = Young Onset Parkinson’s Disease

We think that regardless of your age, you're always too young to have Parkinson's. When someone is diagnosed with Parkinson's at a younger age, it is called Young Onset Parkinson's Disease (YOPD). Parkinson's Disease has the reputation of being a disease associated with old age, with good reason. Essentially, the longer that you live, the greater your chance is of developing PD. If you live into your 80's, you have almost a 2% chance (2  in 100) of developing PD. If you die in your 50's, you decrease your odds of getting Parkinson's, as only 0.1% (1 in 1000) of ...
Active Sex Life May Benefit Men with Early Parkinson’s Disease

Active Sex Life May Benefit Men with Early Parkinson’s Disease

This latest Parkinson’s Disease research is too important not to be shared. Published in the European Journal of Neurology, a new study indicates that an active sex life is linked with lower disability and better quality of life in men with early Parkinson’s disease. Yes, it appears that sexercise is medicine. More study is needed, but word on the street is that volunteers are afraid they'll end up in the placebo group. It is imperative that it gets shared on Twitter and Facebook. This study should be widely publicized and broadcast on every major global news network. Why stop there? ...
Parkinson's Disease Medication Overview

Parkinson’s Disease Medication Overview

Medications for PD fall into three categories. The first category includes drugs that increase the level of dopamine in the brain. The second category of PD drugs affects other neurotransmitters in the body in order to ease some of the symptoms of the disease. The third category of drugs prescribed for PD includes medications that help control the non-motor symptoms of the disease, that is, the symptoms that don't affect movement. The most common drugs for PD are in the first category, dopamine precursors—substances such as levodopa that cross the blood-brain barrier and are then changed into dopamine.  Other drugs ...
Can You Name 38 Vegetables in One Minute!? (Semantic Fluency)

Can You Name 38 Vegetables in One Minute!? (Semantic Fluency)

[Editor's Note: A mind is a terrible thing to waste, but the majority of thoughts are expendable ... brief neuronal impulses that fire, flash, flicker and fade. For some reason, the thoughts preserved in this article did not meet that final fatal fate. We dedicate these thoughts (and introductory alliteration) which should have been lost, to honor more deserving thoughts that should have been remembered.] Semantic fluency. Some fancy pants researcher from King's College in London is trying to "brain shame" us ... all because we can't name 38 vegetables in one minute. Madness, I say. Apparently, some researchers consider ...
Parkinson's and Pain: Have You Thought About Your Mattress Lately?

Parkinson’s and Pain: Have You Thought About Your Mattress Lately?

I've been thinking a lot about Parkinson's and pain lately...not because it is a particularly fascinating topic, but let's just say that it is a topic of personal relevance. Recently, I was chatting with a friend who also has PD, and we were discussing our mutual enjoyment of travel. He remarked on how his (early stage) PD symptoms seemed to bother him less while traveling. He wonders if it is the distraction or break from the routine that helps. Normally, I'd steer the discussion toward dopamine and the placebo effect, because this is great example of creating your own placebo ...
The brain-changing benefits of exercise - Wendy Suzuki

The brain-changing benefits of exercise – Wendy Suzuki

Wendy Suzuki is a neuroscientist at New York University who studies brain plasticity (the ability of the brain to change over time) and how aerobic exercise can be used to improve learning, memory and higher cognitive abilities in humans. If you are not among the 3 million people who have already watched her video “The brain-changing benefits of exercise”, you might find her video inspirational and enlightening. (And don’t forget that caregivers need exercise too.) ...
Nenad Bach & Ping Pong Parkinson

Nenad Bach & Ping Pong Parkinson

From the first time I saw stories about Ping Pong Parkinson, I was sold. I’ve always enjoyed ping pong, even though I’m horrible at the game, and I spend 90+% of the time chasing the ball around the room. So, come to think of, I’m not really sure that I do like ping pong. I like the idea of it, but chasing the little ball around the room, and especially when the ball rolls under a piece of furniture…that is not so much fun. But I do have fond memories of ping pong in my youth, playing in my friend ...
WPC2019 Anecdote: Parkinson's Disease and the Nagging Spouse

WPC2019 Anecdote: Parkinson’s Disease and the Nagging Spouse

My wife went to one session at the World Parkinson Congress 2019 without me.  It is my fault. I suggested it. I had another time commitment, so I suggested that she use the time to go to a panel discussion about living well with Parkinson's. I wasn't there, so I don't know exactly what was said, or the context in which it was said. I only know what she told me she heard. Her takeaway from this session was that one of the panelists said that one of their keys to living well with Parkinson's was that it was very helpful ...
WPC2019 : John Ball - (Still) Living Well and Running Hard

WPC2019 : John Ball – (Still) Living Well and Running Hard

My favorite part of World Parkinson Congress is the people with Parkinson’s, particularly the ones you encounter in the Book Nook and Poster Hall. Yesterday, I had the pleasure of meeting John Hall, author of one of my favorite books about living with Parkinson’s, “Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease” ...
WPC2019 : Linda K. Olson - If I Can Do It, You Can Do It, Get Out And Go

WPC2019 : Linda K. Olson – If I Can Do It, You Can Do It, Get Out And Go

Wow...my words are inadequate to describe the inspirational intensity of WPC2019 opening session keynote speaker Linda K. Olson. In 1979, at the age of 29, Linda lost both her legs above the knee and her right arm in a “train vs. car accident” in Germany. She told her husband of 2 years, who was less seriously injured in the accident that if he wanted to leave her, she’d understand.  He responded “I didn’t marry your arms and your legs … if you can do it, I can do it.” They chose to focus on what they could do, not what ...
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