Slowing Parkinson's Early Through Exercise: Davis Phinney Foundation Research
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- Опубликовано: 31 май 2024
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Professor Bas Bloem and Dr. Sirwan Darweesh explain the Slow-SPEED Study: a study that looks at the possible effects of exercise on the onset and progression of Parkinson's in those in the prodromal stages (early stages before the symptoms that would lead to a clinical diagnosis).
0:00 - Introduction
4:01 - The more rapid growth of Parkinson's versus Alzheimer's
6:32 - Dr. Darweesh's specialization in the "prodromal" (very early) stages of Parkinson's
11:10 - A description of the intervention and the study timeline
16:51 - The role of the genetic testing company "23 & Me" in the research study and recruitment process
19:30 - The goal number of research participants, plan for globalization, and the importance of exercise duration and intensity in Parkinson's progression
23:59 - The biggest challenges of the study
27:36 - Analyzing the study results
29:24 - The importance of supporting this work
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Hello, great information. I am a 65 year old female. I was diagnosed yesterday. I hav always been an athlete and been participating in many types of exercise most of my life. I went to lift class today, the first day after I was diagnosed. Of course that was after 30 minutes of crying. Done with that and ready todo the work.
Kimberley - I'm sorry about your diagnoses and LOVE your attitude. Exercise is work, but the payoffs are significant.
I feel like I am in this very same situation. I'm a 56 year old male that started showing symptoms a few years ago (hand tremors, muscle cramps, insomnia, balance issues, stiff muscles). I am a former triathlete, but hadn't really exercised in about 15 years. Also, as a scientist myself (I'm a wildlife biologist) i read as much as I could about Parkinson's after seeing my neurologist and finding out I may be showing early signs of the disease. After reading and talking with my neurologist I came to the conclusion that I needed to start exercising again. I've been primarily riding my bike, but have also recently incorporated weight training. I was very unfit starting out, but I have steadily increased my volume to 200 miles/week and long rides of more than 100 miles now over the course of the last year (I've also lost 40 pounds). I'm even signed up for some ultra-distance bike races now. As for my symptoms, they are much reduced. I still have hand tremors, but my muscle cramps are significantly reduced, my balance is better, and I generally sleep better now as well, all due to the increased volume of exercise I believe. I still have not been diagnosed officially with Parkinson's, but my neurologist is definitely encouraging me to continue my exercise regime and I certainly plan to do so. Thank you DPF for your continued support of Parkinson's research and people living with Parkinson's.
Love to chat. Interesting I have just started this journey and I'm in denial that this is what I have. I realize there are movement challenges but they can be other things. So I would love to keep in touch there's no online Forum that I found yet so that people can interact share good information
😊
Try Zwift as an excerise plan. I'm hooked at age 57 . Been cycling for 20 years.
High intensity can be done 2 or 3 days a week with an easy workout on the inbetween days.
Success!!
I am an ER nurse-so I am also very interested in knowing as much as I can about PD-it’s uniqueness-and slowing progression. My Neurologist initially did not say I had Parkinson’s, but with tremor-some bradykinesia-slower gait (but I am short 5-5”-lol), and REM SLEEP DISORDER he said that’s pretty definitive. By that point, I had adjusted to the idea. My sx are very manageable and I feel ok with it. Exercise is a great help physically and mentally. BOLDLY GO! LIVE YOUR BEST LIFE!
I lose my sense of smell and taste 18 years ago at 52. I went through many years of no diagnosis until I was 68 when I started temors and more severe cramping. I was a person who exercised lightly to moderately throughout those years. I did it because I felt better mentally and physically. I do think it help slow my undiagnosed Parkinsons now that Im 70. I have more symptoms and taking Levodopa for the last 2 years after I was diagnosed.
Hi Walt - It's great that you're sticking to exercising. Along with taking your medication, exercise is a key ingredient for living well with Parkinson's.
Hi! I ‘m a 63 years old lady from India &I am diagnosed with early Parkinson’s , a few months ago. I am a cyclist & have been exercising through out my life. Unfortunately I cannot be a part of your extremely interesting study; but it would be great if you reveal the exercise regimen incorporated in your study. Hope your protocol permits you.
Glad to see this study being done. My clients will be so happy if they don't pass PD on to their children/ grandchildren
Thank you for this informative video. I will start trying to spend more time each day walking of riding a stationary bike or just moving rather than sitting in front of a computer screen. My wife will be worried about me falling , but I will get my walking poles out and be careful when walking.... Yesterday I was contacted by the Lumineres Studies Center to participate in a study. Dr. Salil Manek is my Neurologist in Spokane, WA.. I am a 78 year male, who has undergone a DAT-Scan to confirm a lack of Dopamine & I am on Carbi- Levo Dopa.
Great idea, Robert. Walking poles are a great idea so is riding a stationary bike. Safe movement is key.
I have early Parkinson’s-dx x 2020. Taking sinemet x 3-4 x/day. I feel my sx are very stable. Recently we went on a two week road trip driving 8-10 hrs a day. Once we got home-I was tired, felt very stiff, and no motivation to get back to activity levels prior to trip. It’s almost 2 weeks since we got back and I am just now getting my motivation back.
This is an important observation! Disruptions to routines--especially when the disruption can limit how much physical activity you get--can have big impacts on symptoms. It can take a while to get back into the flow that helps you manage your symptoms most effectively. Having a plan can help, because you may need to ease back into higher levels of activity. Every little bit helps, so doing a little more each day can be a good approach.
@@davisphinneyfdn thank you that is so helpful. I just thought I was being a slacker. I will continue to push through my physical blahs . I will definitely be very mindful of maintaining activities with future travel!
@@davisphinneyfdn I got back to working out-after 2 days I already feel better.
I could listen to Bas all day long, in fact when I am exercising, I often take his voice with me.
I am 56, diagnosed last year. Am wondering if we could do a backward looking study of people diagnosed with PD who were previously very active.
I am one of those people. In my 40s I noticed issues with my co-ordination learning kung fu. It was hilarious, I just couldn’t keep my upper and lower body synchronised. Also rigidity in my lower back. So I spent more time on my Tai Chi. At the time I was running, cycling & walking a lot.
Returning to the UK and without a teacher I let my Tai Chi lapse but continued to be very active until a hip impingement limited the volume of exercise I could do. That’s when the tremor started.
Now hip replaced (2 weeks before diagnosis) I am back to exercising. I can feel the positive impact on symptoms. I dance (tough brain work out), box, walk across boggy fields (good for balance), started my Tai Chi again, play guitar, run & cycle.
All of these things help and I’m hoping that keeping/reforming the muscle memories will help as the condition progressed
Great idea bring Bas with you. We could all benefit from doing that:) Not sure what you mean by this: Am wondering if we could do a backward looking study of people diagnosed with PD who were previously very active. What question are you looking to answer? Do people who exercise have less of a chance of getting Parkinson's? Do people who exercise have more of a chance?
@@davisphinneyfdn Sorry for the poor English. I am English but sometimes get lost in my thoughts. hahaha
I was wondering if our (previously active people) memory muscle could be useful in helping us
1. Continue to stay active
2. Help us retrain our brains better
For 1, I used to focus on softness and running like a grass hopper. Now I notice when that is not happening and make conscious micro adjustments. I hope this means my running will deteriorate less quickly.
For 2, I am remembering and reinstating those old Tai Chi neuro pathways. I used to fly paragliders too. For both I was very practiced at dry running moves. i’d mental practicing before doing. I think this ability is helping me relearn activities like skipping that I find really difficult by rewiring the neuro pathways.
Simply put, I think that maybe those of us who were previously very active in certain ways (using that mental planning) may fair better with a neuro condition because our brains are already used to adapting to new things.
Not at all scientific and I will try finding a better way of describing this feeling.
Hey, in case I might be useful for your research, I started getting symptoms after running about 25 marathons and one ultra over the preceding 15 years - I've done very little running over the past 4 years due to the rise of the symptoms. I've recently quit work and plan to devote myself full-time to sport/exercise for at least a year.
Based in Brussels - available for any guinea pig activities that you may deem useful.
I'm 65. Diagnosed 18mo ago. Very interested in participating. Currently exercise 5-6hours/week by cycling. One session on saturdays normally 3 hours. Is an academic researcher myself. How can I get involved?
i am 56 recentlv diagnosed with PD ... its more than 15 years that i exercise at all !
i am all alone i have never spoke to another person with pd..
i only see your videos
how can i convince myself to start exercise__
watch our videos too and see if we can help! Lisa
I have been with Parkinson’s for 7 years. I had to give up working. Now when I visit my ex colleagues they are amazed and want me to come back to work. Obviously they only see me on my good days. But now I ride a bicycle I now regret selling my motor bike but at the time I felt I was the correct thing to do for safety of other people. Just to return to the now, I cycle,play tennis go to a
Bio kinetic therapist 2 times a week and have a home gym with a few weights balance balls and pad a boxing bag a boss ball a medicine ball and a few others. The main problem is sleep quality I sleep an hour every day. And travelling takes some time to get back into a routine over a week if it includes flying. A day or 2 if it is a long drive. I also do house cleaning with my wife.
The being alone part that’s the hard part. Is there maybe a support group near you even if it is not Parkinson’s specifically.
I think try a biokinetis if you can to get you started. I love my bio the main reason I am seen as “normal” they got me back on a bike.
My other secret weapon is a good full body massage once a month. I would do it every 2 weeks if my finances allowed. Best wishes
@@chriscampbell9742 thanks for your answer
Can someone help with an online chat? Because I'd love to be a part of that the solutions and the ideas and the methodologies for navigating through this I think are critical and they are missing that part
I'm curious as to what the theory is for why exercise helps at all? is it about conditioning neurons? clearing bad proteins from the brain? etc. What is the actual linkage?
Here's a great webinar for you to watch on exercise, neuroplasticity, and Parkinson's: ruclips.net/video/MilRxMjDQHg/видео.html
Hi! My name is Dione and I was diagnosed with Parkinson’s 9 years . I’m from Brazil but I’m living in USA since 2007. I’m 59 years old . I still working . I take levodopa/ cardidopa and it still working. I’m scheduled to do DBS in July but I feel like I could try something else before do the surgery. I work with kids then I have to move all the time but I don’t do exercise. I need help to do exercise, maybe this program will help me.
To anyone this might help. I developed neck pain and stiff shoulders. I was sent to physical therapy. Then, I developed stiffness and a tremor in my right hand. I was sent to physical therapy. I was a bit frightened at this point as I had an Aunt who slowly died from Parkinsons. The physical therapists admitted they could not help me - after exhausting my insurance benefit. At no point, did any doctor or therapist mention Parkinsons. On my own, I discovered that one of the meds I had been taking for a number of years caused Parkinonism - having symptoms of the disease, but not the disease itself. I tapered off the drug. Within a few weeks, the pain in my neck that I had for 2 years was gone. The stiffness in my arm went away. And, finally the tremor was gone. This is not the case with most of the population displaying Parkinson symptoms. But perhaps it will help someone.
Wow, Krisha! Good for you for continuing to stay on it, investigate, and get to the bottom of it. I'm so glad you figured out what was going on. I hope you are continuing to be symptom free.
Which drugs caused your Parkinson’s symptoms?
Am interested in participating from US, in prodromal phase, tentatively diagnosed with emerging PD in late 2022. Exercise regularly (biking, speed asking,gym, a trainer. Am I a potential candidate?
Doctor so what are your assessments of the BIG program?
There's a lot of research on the value of the LSVT Big. Program. That said, everyone's experience is different. The best thing to do is try it and see if it works for you.
Hi, I'm a 27 year individual, I've recently learned that I'm carrying a mutation LRRK2 gene (G2019S) variant, I'm also of North African descent, which greatly increases the risk of PD later on life. Would love to talk to Dr Sirwan Darweesh, can't find his e-mail. Anyone?
Hi there - I would try LinkedIn.
1. I imagine the new MJFF test for the presence of alpha synuclein in spinal fluid (and future versions of it which might measure how those levels change over time) would make it much easier to evaluate intervention effectiveness, compared to just observational tests.
2. 23andme actually works based on saliva samples, not blood tests.