"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 ...
WPC2019 : Lyndsay Isaacs - PD caregiver breaking points and lessons from a selfish pig.

WPC2019 : Lyndsay Isaacs – PD caregiver breaking points and lessons from a selfish pig.

Lyndsay Isaacs speech was one of the highlights of the WPC2019 opening session.  A large portion of the WPC2019 opening, not just Lyndsay’s portion, was dedicated to remembering her husband Tom Isaacs, co-founder of UK-based charity Cure Parkinson’s, who passed away since the last WPC. Obviously, any discussion of Tom Isaacs is going to be a mix of sorrow at his passing and smiles recalling memories. But I found her personal story as a caregiver to be extremely insightful, as she touched on her struggles, reaching her breaking point, and finding a way forward. When she was struggling, she found ...
Parkinson’s vs. Chopsticks - World Parkinson Congress 2019

Parkinson’s vs. Chopsticks – World Parkinson Congress 2019

As the Parkinson’s community prepares to convene in Kyoto next week for #WPC2019 (World Parkinson Congress 2019), my observation for today is that there is one tradition of Asian cultures that is not particularly Parkinson’s friendly or accommodating ... chopsticks. People with Parkinson’s in this part of the world must have serious challenges with traditional meals. The western world’s “Parkinson’s vs. the soup spoon” is trivial in comparison and hardly seems worth complaining about. I’ll be curious if there is any increased awareness of this issue in Kyoto next week. We’re visiting Beijing and Tokyo enroute to Kyoto. Tonight’s dinner ...
Got Parkinson's? Get a Grip!

Got Parkinson’s? Get a Grip!

Losing your grip is more than just an analogy about Parkinson’s Disease. Quite literally, it's a physical manifestation of the disease, and one of the areas that is tested in the Unified Parkinson's Disease Rating Score (UPDRS) motor score that is used to measure the severity of Parkinson's Disease. There was an interesting study several years ago that found that declining grip strength on its own, was a good indicator of PD progression. https://www.ncbi.nlm.nih.gov/pubmed/25653226 Why is this significant? Well, as Parkinson's gets worse, you lose more and more of your ability to grip, and this has negative impact on quality ...
What I Wish I Knew, But Am Glad I Didn't Know (When I Was Diagnosed With Parkinson's)

What I Wish I Knew, But Am Glad I Didn’t Know (When I Was Diagnosed With Parkinson’s)

This title sounds like something Yogi Berra might have said. Like baseball, Parkinson's Disease is 90% mental and the other half is physical. (I think that's actually quite a profound analysis of life with PD.) What I wish I knew when I was first diagnosed with Parkinson's is that a lot of people continue to lead long active lives with Parkinson's Disease for 10 to 20 years, and even longer, and some actually lead more active and more productive lives post-diagnosis. John Cleese once said, "Life is a terminal disease, and it is sexually transmitted." Parkinson's by contrast, is neither ...
Device Provides On-Demand Cues to Recover from "Freezing of Gait"

Device Provides On-Demand Cues to Recover from “Freezing of Gait”

A Cal Poly (California Polytechnic State University) student project to help a local military veteran has become a business designed to help patients with Parkinson’s disease overcome a debilitating and dangerous symptom known as “freezing of gait.” De Oro Devices, based in San Luis Obispo, California, recently edged out six other startups for a $100,000 investment during the second annual Central Coast Angel Conference Pitch Competition held in April by the university. While working on the project as part of the Quality of Life Plus (QL+) program, which pairs the challenges of wounded vets with student projects, student Sidney Collin ...
Mayo Clinic Report on Low Vitamin B-12 and Parkinson’s Disease

Mayo Clinic Report on Low Vitamin B-12 and Parkinson’s Disease

Mayo Clinic has published a research commentary that analyzes the relationship between low levels of Vitamin B-12 and Parkinson's Disease. While the paper does not prove causality, it does "propose that vitamin B12 supplementation could be considered as an adjuvant approach to improve cholinergic transmission and, potentially, motor and cognitive function in patients with PD." And it makes a case for "future clinical trials of high-dose vitamin B12 supplementation as a well-tolerated symptomatic adjunctive therapy for posture and gait instability and cognitive impairment in PD." Mayo Clinic Video: The paper analyzes the potential relationship between vitamin B12 and acetylcholine metabolism. Dysfunction ...
Low Volume Resistance Training Improves Function in Older People w/ Parkinson's

Low Volume Resistance Training Improves Function in Older People w/ Parkinson’s

Muscle weakness is an almost universal symptom in Parkinson’s Disease. Or is it? This is actually a topic of some debate. People with Parkinson's certainly perceive muscle weakness, which is attributed to low levels of the neurotransmitter dopamine. However you look at it, the motor related symptoms of PD lead to decreased muscle usage, which compounds the problem, resulting in decreased muscle mass. Strength training exercises for all major muscle groups is a common sense strategy to counter the effects of PD. Grip strength, in particular, has been singled out as a primary indicator of PD progression. (See "The Association ...
Outrunning Parkinson's at the Boston Marathon 2019

Outrunning Parkinson’s at the Boston Marathon 2019

When it comes to running, no event is more prestigious than the Boston Marathon. This year's Boston Marathon finishers included at least two people with Parkinson's Disease (and one extremely supportive spouse), who are inspiring us to challenge the limitations of Parkinson's Disease. Michael Quaglia was diagnosed with PD 13 years ago, at the age of 42. This news report from NBC 10 News in Providence, Rhode Island tells his story: “You wake up every morning and you say, ‘Hopefully, today is going to be a good day,’ If it is, you take advantage of it. If not, you do ...
Loading...