(Author’s Note: Oops, I pressed the button to publish this article and video compilation before it was complete. Please consider it a work in progress.)
Balance Training is not a Parkinson’s specific issue, it is an issue for everyone as they age.
Selecting the appropriate balance exercises will depend on how good your balance currently is. There are many factors that affect balance, and it can be argued that all leg strengthening and core strengthening and flexibility exercises are, in a way, balance exercises.
I’ve highlighted a few videos that provide ideas to consider when selecting balance exercises. If you watch the videos, you’ll notice the final video seems out of place. That is because I have a theory that many Parkinson’s balance issues are related to turning difficulties. Improving neck flexibility (the first video) and adding resistance to trunk/ab twists (the last video) are two exercises that help improve turning deficiencies. Read More
This is a recap of the most interesting news and discussions related to Parkinson’s Disease this past week.
We start by trying to make sense of the latest news reports about Vitamin B-12 and hereditary Parkinson’s. The research is very preliminary, but quite interesting when considered in conjunction with other recent studies. Next we ponder why researchers are giving fruit flies jet lag; see how PD progression can be measured with standard MRI equipment; learn why yelling at clouds may be a sign of a particular non-motor symptom of PD; watch local TV news stations participate in Parkinson’s Disease Awareness Month with coverage of a unique Parkinson’s exercise program in Austin, Texas, as well as 7 different Rock Steady Boxing affiliates; and more.
A recent study identified Vitamin B-12 as being able to offer neuroprotection in hereditary Parkinson’s Disease associated with the LRKK2 gene. This was an animal study, so we don’t yet know how this applies to humans, but there are a few reasons why this could be significant for a wider audience of people with PD, and not just those with the LRKK2 gene. Did you know that having a low level of B-12 in early stages of PD is a good predictor that you will see a greater worsening of mobility as PD progresses? Or that B-12 deficiency can cause strange sensations, numbness, or tingling in the hands, legs, or feet? Learn more: https://parkinson.fit/forums/topic/making-sense-of-the-latest-news-about-vitamin-b-12-and-parkinsons/
For Parkinson’s Disease Awareness month, Cleveland Clinic is feeding media outlets a ready-made story about the importance of exercise with Parkinson’s. It’s rather odd to see how they seed these stories to the media hoping someone will pick up the story, and how they include a video with awkward silent interludes to allow the local newscaster to insert a voiceover to ask questions of the expert. Still, we like the message from Dr. Benjamin Walters: “If you have early Parkinson’s, this is something that there’s a lot of data from supported by this and other studies – that show that exercising improves the outcome, may improve the progression of the disease and can improve symptoms and disability.” See behind the media curtain here: https://newsroom.clevelandclinic.org/2019/04/04/study-parkinsons-risk-lower-for-active-men/
(The study being referred to is here: https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2703129)
This next study was ready for release on April 1, but they held it until April 2, so it would have a chance of being taken seriously. Researchers were stunned to discover that jet lag could stop Huntington’s Disease in fruit flies. I was stunned that they thought to check. But this quote from the lead researcher made me wonder what these scientists will think of next: “We essentially gave the flies jet lag for every day of their lives. It is like travelling four hours east every day.” I have so many questions about these frequent flyers! I know that fruit flies have a choice of airlines when they fly. Were there particular airlines whose aircraft interiors made the flies feel more like they were at home? Which airports and airport restaurants do fruit flies prefer? Read more: https://parkinson.fit/forums/topic/what-will-they-think-of-next-jet-lag-stops-huntingtons-disease-in-fruit-flies/
The University of Florida department of Advancement published an interesting article on Parkinson’s Disease. The article focuses on researcher David Vaillancourt, and research study participant Gary Keating, brought together by a common goal to cure Parkinson’s, and a love for the game of basketball. Both have stories to tell that involve Parkinson’s. Vaillancourt led a team that used diffusion imaging, a type of MRI, to reveal that, over time, Parkinson’s patients lost vital dopamine neurons in the substantia nigra and gained more of a fluid known as free water. Keating, on the other hand, has had a prolonged personal experience with Parkinson’s Disease. A former basketball coach, Gary helped his father (also a basketball coach) battle PD for 14 years. Six months after his father’s death, Gary was diagnosed with young onset PD himself. 10 years later, he’s challenging PD with basketball therapy, and challenging the lead researcher of the study he participated in to a game of one-on-one. https://parkinson.fit/forums/topic/parkinsons-research-and-basketball-therapy-for-parkinsons/
CBC News Canada has a great article and video about an Alexander Technique practitioner who is using the therapy to help people with Parkinson’s Disease. The Alexander Technique is a 100+ year old educational method that was created to retrain habitual patterns of movement and posture. By teaching how to change faulty postural habits, it claims to enable improved mobility, posture, performance and alertness, along with relief of chronic stiffness, tension and stress. People study the Technique for a variety of reasons. The most common is to relieve pain through learning better coordination of the musculoskeletal system. Another reason people take lessons in the Alexander Technique is to enhance performance. Athletes, singers, dancers, and musicians use the Technique to improve breathing, vocal production, and speed and accuracy of movement. https://www.cbc.ca/news/canada/edmonton/parkinson-s-candace-cox-actor-edmonton-1.5083075
Michael J. Fox sat down with Fortune Magazine to discuss PD research and life with PD. Looking back, Fox said he has been surprised about two things as it relates to his disease. The first? “I didn’t realize we were starting with Kitty Hawk and we wanted to build a space shuttle,” he said with a smile. The second? “I’m still standing.” Watch the interview: http://fortune.com/2019/04/03/michael-j-fox-parkinsons/
Yelling at clouds is one thing, but it’s another thing when you start taking pictures of clouds and posting them on social media with urgent messages about how they are symbols about the need to repent and get ready for the end of the world. Dan McFarland is sharing his experience to raise attention about a somewhat common non-motor symptom of advanced stage Parkinson’s, delusions and hallucinations. More on his story: http://www.imperialbeachnewsca.com/online_features/health_and_wellness/article_4c2415de-5e4b-50ff-aee6-02e31cbc6c67.html. This story includes a link to MoretoParkinsons.com, which the cynic in me sees as a promotional website for Nuplazid, a pharmaceutical drug used to treat these symptoms, which has been receiving increased FDA scrutiny. However, cynicism aside, it is worthwhile to educate yourself on warning signs to better recognize these symptoms.
This is a recap of the most interesting news and discussions relating to Parkinson’s Disease this past week.
Researchers delivered a sobering statistic that if you can survive more than 10 years with Parkinson’s, there is a greater than 50% chance of developing dementia…and reminded us that regular exercise is the best intervention to avoid becoming a statistic.
Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s…the fascinating story of a wife who nagged her husband about his hygiene for years before his PD diagnosis…20+ years later researchers are using her to sniff out biomarkers that can be used for early detection.
Michael J. Fox told an interviewer about a rather serious fall…most news outlets focused on the fall…but the original interview is an inspiring read.
Meanwhile, as part of an initiative to reduce falls and prevent freezing of gait, the Michael J. Fox Foundation is funding testing of an in-shoe wearable device that uses vibration therapy.
Mirror mirror on the wall, who’s the shakiest of them all? A tech startup is developing a mirror-based system that uses artificial intelligence to assess the severity of Parkinson’s Disease.
It is well known that over time, taking levodopa/sinemet becomes less effective for treating Parkinson’s symptoms. A new study aims to determine whether or not levodopa contributes to PD getting worse.
Meanwhile, researchers study the scientific importance of a good night’s sleep in such excruciating detail that it puts us to sleep. Zzzzzzzzz…
Past statistics indicate 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. 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. They concluded that all types of exercise are associated with improved cognitive function in individuals with PD, with high intensity aerobic exercise appearing to best improve memory. More details: https://parkinson.fit/forums/topic/exercise-can-improve-non-motor-symptoms-of-pd-hint-mental-cognitive-function/
Fee-fi-fo-fum, this woman can smell the musky smell of Parkinson’s. Les Milne was diagnosed with Parkinson’s Disease in 1995 at the age of 45. His wife, Joy, had noticed that he had a woody, musky odor…something that had started more than 10 years prior to this diagnosis. Back then, she had started suggesting to him that he wasn’t showering frequently enough or brushing his teeth enough. Finally, like many wives, she gave up trying to improve his hygiene. In 2012, 17 years after the PD diagnosis, the couple were at a Parkinson’s awareness conference when Joy realized that she was surrounded by people that smelled like her husband. Les passed away in 2015, but researchers at the University of Manchester (UK) dubbed Joy the “super smeller” and are following the scent in search of a biomarker that can be used for early detection. Preliminary research has identified several candidates. Along the way, we discover that it’s not excessive sweat, it’s excessive sebum…and why people with Parkinson’s are more likely to have dandruff. This story is an improbable journey: https://parkinson.fit/forums/topic/the-woman-who-can-smell-parkinsons-why-you-have-dandruff-and-biomarkers/
Michael J. Fox opened up about some of his recent health issues in an interview with the New York Times Weekend Magazine. Various news outlets did their own reporting with a bit of a “doom and gloom” spin, but if you read the original full interview, it’s rather positive and inspiring. In spite of all the challenges, his closing quote is a gem: “It makes me think, Can I just keep going in this adventure? Because if the worst I’ve had is as bad as it gets, it’s been amazing.” Read the interview here: https://www.nytimes.com/interactive/2019/03/01/magazine/michael-j-fox-parkinsons-acting.html
A startup based on University of Delaware research, has received a $440,000 grant from The Michael J. Fox Foundation for Parkinson’s Research to test an in-shoe wearable device, called VibeForward, that uses vibration therapy to reduce symptoms of freezing of gait in patients with Parkinson’s Disease. This funding is part of a Fox Foundation initiative launched in 2018 to evaluate non-pharmacological interventions that have the potential to significantly improve the daily lives of people with Parkinson’s, particularly related to the treatment of gait and balance. Injuries from falls severely impact the quality of life for people with Parkinson’s Disease, as evidenced by Michael J. Fox’s personal account of his recent health issues. We dig up some of the backstory of the PDShoe research project that has now evolved into VibeForward: https://parkinson.fit/forums/topic/vibeforward-vibration-tech-reduces-freezing-of-gait/
Mirror mirror on the wall, who’s the shakiest of them all? A startup in Australia is developing a mirror-based system that can assess the severity of symptoms of Parkinson’s Disease in the home. The mirror, called Lookinglass, has a display that is visible through the mirror, which asks the user to complete a set of evaluation exercises based on standardized tests used to assess Parkinson’s Disease severity. The key technology is the camera vision system that uses AI to track movement and provides an automated assessment that is then shared with health professionals. https://parkinson.fit/forums/topic/mirror-uses-ai-to-perform-routine-remote-evaluation-of-pd-symptoms-lookinglass/
For those who are either new to, or unfamiliar with Parkinson’s Disease, one of the things that seems to surprise most people is that the prescription drugs have no effect one the disease itself. The drugs provide only symptomatic control. Whether you take the drugs or not, the disease progresses (gets worse), and the drugs have less ability to control the symptoms…requiring larger or more frequent doses…and/or becoming less effective. There is a school of thought among some neurologists (and a larger proportion of their patients) that you should delay taking levodopa medication until it is absolutely necessary, especially for those diagnosed with PD at a younger age. There is considerable fear that levodopa may actually cause PD to progress more rapidly. A recent study says there is no reason for concern, and that their results show “No Harm in Using Levodopa Early in Parkinson’s for Symptom Relief…levodopa, in combination with carbidopa, did not have a disease-modifying effect on Parkinson’s disease, either beneficial or detrimental, over the 80 weeks of the trial.” That’s good news, because as an alternative to levodopa, many of these neurologists prescribe dopamine agonists, a category of drugs that have a surprising efficacy in destroying lives. More information here: https://parkinson.fit/forums/topic/no-harm-in-using-levodopa-early-so-please-dont-prescribe-a-dopamine-agonist/
There were two interesting studies drawing connections between PD and sleep released last week. On the one hand, people with a sleep disorder called REM sleep behavior disorder (RBD) were found to have an extremely high risk of developing Parkinson’s Disease: https://www.medicalnewstoday.com/articles/324630.php
On the other hand, Israeli researchers discovered sleep is necessary to repair DNA damage accumulated during our waking hours, holding promise for new treatments for neurodegenerative diseases like PD. There’s an interesting article about the study, with so much scientific discussion of sleep that it just might put you to sleep. Seriously, it’s a good read: https://www.israel21c.org/sleep-vital-to-repair-dna-damage-israeli-study-finds/
Bonus Content: Brian Grant had an impressive 12-year career in the NBA before being diagnosed with Parkinson’s. Fellow PDer Scott Rider has a great video interview with Brian, where they talk about the Brian Grant Foundation, and life with PD, especially earlier onset PD. Scott is fundraising for the Parkinson’s Foundation. Through May 1, 2019, MassMutual will donate $1 to the Parkinson’s Foundation for each of the next 5,000 subscribers to his YouTube channel. So head to his YouTube channel and help him reach his goal: Scott Rider – I Won’t Quit
In a research study published in the Journal of Parkinson’s Disease, researchers from Northwestern University determined that that people who exercised regularly had significantly slower declines in HRQL (health related quality of life) and mobility over a two-year period.