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Found 28 results

  1. Hi everyone I've been lurking in the shadows here for a while and I have an exercise question that I can't find much of an answer for. First the question, then I'll give my background info for context. Everyone says exercise is a must for PD, yet I find that when I exercise, my symptoms get much worse for several hours, before returning to baseline. Though I recognize that in the long term it may help, it's hard to motivate myself to get off the couch when I know I will feel like heck after. This applies to any type of exercise, including just a busy day running errands etc. I have found that I can limit the impact slightly by being aggressive with my sinemet dosing, but I haven't found a good "formula" yet. My question is twofold - is this normal for people with PD, and if so, how do you manage the issue? Now my background. I'm 34, diagnosed 6 months ago, though I was suspicious of PD about a year before that. Much of that 1 yr delay was because my DAT came back normal and first neuro concluded it was likely just 'in my head'. Long story short I found another neruo, ironically not an MDS like my first one, and he made the diagnosis and started sinemet (due to problems with ICD's I can't be on the DA's nor Rasagiline, learned the hard way). Initially I was on 3 X 100/25 immediate daily, but symptom control was not great and it did not last long enough to get me from dose to dose. I also had some mild 'diphasic' type dyskinesias (so much for 5 years, I was dyskinesia free for 1 month . By 'mild' I mean it didn't keep me from doing anything but people would sometimes stare at me. Anyway my neuro upped the dose to 6 X 100/25 daily and after some experimenting I settled on the same dose but with a schedule of 4 X 1.5 pills instead of 6 X 1 pill. Currently my symptoms are well controlled through the day and dyskinesias nearly gone, though the evenings are a bit tough sometimes. But enough about me, what does exercise do for you (or to you ? -Ed
  2. I started Tai chi classes again. My instructor in the special classes has had Parkinson's for over 20 years! She has to be over 70 years old.
  3. Hello - While medications for PD can alleviate symptoms and increase quality of life, the medications often have side effects. My inclination is to delay medication as long as reasonably possible - I am wary of medications in general. Also, I read that Levodopa loses it effectiveness - that's scary. But i read elsewhere that's a myth! Right now, my symptoms are mild, but my neurologist said he will put me on the dopamine agonist Requip when the time comes. Should I jump on the medications bandwagon sooner for quality of life, or follow my instincts and delay? Are there any reasons at all to delay medications once the PD symptoms are stronger? I like exercise - I'm willing to try and control my symptoms with lots of walking and biking and more. I appreciate any insights whatsoever on these weighty decisions!! Jul
  4. Exercise is a great way to manage your PD. It's one way you can fight the progression. I am working with a great trainer. We are doing a program that includes both physical and mental excercises and will include the PWR4LIFE program with a PWR certified instructor. PWR (Parkinson wellness recovery) was developed by the PT who developed LSVT BIG & loud program If you are looking for one in the YORK, PA area- reach out!
  5. Exercise is a great way to manage your PD. It's one way you can fight the progression. I am working with a great trainer. We are doing a program that includes both physical and mental excercises and will include the PWR4LIFE (Parkinson Wellness Recovery) program with a PWR certified instructor. It was developed by the PT who developed the LSVT BIG & LOUD program. If you are looking for one in the YORK, PA area- reach out!
  6. A recent change on my parkinson's blog is starting a video blog. Since it has a recording of me doing a Zumba dance, I thought it might be of interest to some here. Dancing while I still can! http://rickspdjourney.blogspot.com/2015/06/exercise-and-zumba.html
  7. Hi Everyone, I'm currently doing a project which involves collecting data on exercise trends, particularly in Parkinson's disease patients, although those without the disease are also encouraged to participate. I have created a short survey to collect information on this topic and I would be very grateful if you could take some time to fill it in for me. Thanks for your help. The link for the survey is below: (https://goo.gl/forms/RZDIR1A8VSP3QdEM2)
  8. This week, I had my last MDS visit before the 3 year anniversary of being diagnosed with PD. The visit lasted about 30 minutes and involved talking about every one of my symptoms as well as a physical exam. My biggest issue is my tremor, which has been stubbornly fighting every effort I make to eliminate it. Weight lifting and boxing helps. Medical Marijuana helps, but doesn't last more than 3 hours. The MDS said that tremor is often resistant to efforts to combat it and that includes typical PD meds. He said the best chance to improve tremor is DBS, but that we certainly wouldn't rush into brain surgery (my thoughts exactly). The bottom line for this visit was to continue just as I have been. He said that my progression is very slow. Keep up the exercise. Keep up practicing good habits (walking correctly, good posture, etc). Keep using the Inosine. Keep a positive attitude. No PD meds for the foreseeable future. If you're wondering, I did ask him about medical marijuana. He basically said that since it's illegal (although not criminal) in my state, that he didn't have an opinion on it. When it becomes legal, he will do some reading on the subject and may have an opinion then.
  9. My wife was diagnosed with PD at the age of 45, That was 4 years ago. She has a great doctor, but that's the only one she see's. He is a Neurologists and one of the top movement disorder Doctors in NJ. My wife is getting anxiety about every thing. And having major break downs. I would like us to see some kind of Phyciatrist or Therapist. Her Neurologists has her on Prozac. But there of course is something more extreme going on. I know PD comes with all of her moods. Just not sure which direction to go in to help both of us. Especially my wife, I feel helpless seeing her like this. Again I know it comes in the PD territory. I am just not sure how I can help. She seems like she doesn't want to help her self, also she has been on permanent SSD for about a year. And I think she should get involved with something. Yoga I don't know. Anything that has a schedule where she can go and feel better. I can go on but I don't want to go through every detail.
  10. Here is an excellent video posted by Texas Tom. In this "60 Minutes" show, we see PWP that have actually gotten better with exercise, in this case Rock Steady Boxing. In fact, a researcher who conducted a study of PD patients that participated in Rock Steady Boxing found that they had NO PROGRESSION over a 2 year period. In fact, some of the participants were better at the end of the study than when they had been diagnosed. One guy was better than when he was diagnosed 15 years earlier!!! This is a must see video for anyone diagnosed with PD. Put forth an effort and get better, or go the traditional route and slowly decline. This result is not limited to Rock Steady Boxing. The Delay the Disease program has had similar results. https://youtu.be/EfDHGbuvqiw https://www.youtube.com/watch?v=EfDHGbuvqiw&feature=youtu.be
  11. I've been seeing research on exercising with a bike. What is the best type of exercise bike to use for PD. Recumbent stationary bike vs Theracycle Or does it mater? IS 90 RPM considered forced exercise? How is that measured? Thank you
  12. I am an occupational therapist in Washington state. I have a patient who has advanced/Stage 4 Parkinson's. He has had a deep-brain stimulator implanted, so does not have tremors. I am searching for information about hand flexion for Parkinson's - is it wise to continue thera-putty and resistive flexion with this patient or Parkinson's patients in general? His hand flexion is very strong and sometimes we can barely remove his hand from objects. His wife wants him to keep strength in his hands, which is understandable. Would it not make sense to do more extension stretching and exercises such as lifting one finger at a time from table when hand is palm down though? Do you know of any good resources like this one only focused on therapy and activities of daily living, or am I missing such a resource on this site? Thank you.
  13. I finally had my meeting with Delay the Disease founder, David Zid. All I can say is WOW! I think I've finally found out how to get rid of my PD. It's clear to me that there is not one fix for all PD symptoms. To stop PD in its tracks requires using multiple tools. Walking a significant distance each day and stretching has already significantly improved my rigidity, stiffness, gait, slowness. It has increased my endurance and reduced fatigue. That's part of the answer. Then there's that nasty tremor. David says that a specific program of weight training will fix the tremor in weeks, not months. I will start this program immediately and report on my progress. Finally, there are those nasty cosmetic issues. In my case, that's the missing arm swing and masked face (the things that make us look like a zombie). These issues are really just bad habits that developed as the dopamine decreased and can be easily fixed by replacing the bad habits with good habits. Interestingly, freezing is also a bad habit (one that I don't have) and can also be easily fixed. In my opinion, this is another way of saying that the brain is neuroplastic and can be rewired by training the mind and body with new habit patterns. I've already made significant progress on my arm swing after practicing it for several weeks. At this point, I have to think about my arm to get it started, and once started, it will continue swinging on its own. That is significant progress, but I still have some more to go. If while walking, my mind is stressed by anything (cold, a conversation, etc), the arm will stop swinging as if the brain can't do two things at once. My arm also will not yet start swinging subconsciously. It will take more practice to replace my bad habit (no arm swing) with a good habit (an automatic arm swing). The same is true of my masked face - I've got to replace the bad habit with a good one.
  14. After some research, it appears dance exercise is one of the best for PD patients. So this past week joined the local YMCA and attended two Zumba classes and one Yoga. Plan to continue, though I'm not a dancer. First time for everything. Good exercise, though.
  15. The Breakthrough Therapies for Parkinson’s Disease Every Patient and Caregiver Should Know About Paperback and Kindle Versions Available at Amazon.com http://www.amazon.com/10-Breakthrough-Therapies-Parkinsons-Disease/dp/0692497412/ref=sr_1_40?ie=UTF8&qid=1441071806&sr=8-40&keywords=parkinson%27s+disease Ifeanyi Enoch Onuoha said, “every challenge you encounter in life is a fork in the road. You have the choice to choose which way to go: backward, forward, breakdown or breakthrough.” Since the publication of Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease, the most common question we have received from patients is what are and what will be the next breakthrough therapies for Parkinson’s disease. A breakthrough is defined as a sudden increase in knowledge, improvement in technique, or fundamental advancement in understanding. Often breakthroughs occur when a formidable obstacle is penetrated. Breakthroughs are heralded as major achievements and they pave the road to meaningful progress in any disease. I have spent my entire professional career focused on Parkinson’s and related diseases. I have been blessed to spend much of my time taking care of patients, and I have evolved to understand the critical need for all those suffering to have access to information on breakthrough therapies. The point that I emphasize with my patients is that breakthrough ideas and therapies in Parkinson’s disease stretch far beyond a single drug or stem cell. There is, in fact, a broader and more exciting picture and portfolio of breakthroughs spanning drug, cell, vaccine, device, genetics, care, and behavior. Patients and families with personal investments in Parkinson’s disease should be informed and updated about all of the potential breakthrough therapies. So, “what will be the next breakthrough therapy?” Because of the complexity of the disease, each person possesses a different combination of bothersome symptoms. This complexity means that the answer to the next breakthrough therapy will vary patient to patient, and it could be a breakthrough in care as well as possibly a new device or drug. We have at the National Parkinson Foundation been monitoring the breakthroughs in the field. We run the free international Ask the Doctor web-based forum, and the questions posted have helped us to keep an accurate pulse on the field. Additionally, our blog called “What’s Hot in Parkinson’s Disease” as well as guest columns as the associate editor for the New England Journal of Medicine’s Journal Watch have provided the material, insight and inspiration for a new book; 10 Breakthrough Therapies in Parkinson’s Disease. Collectively, these experiences have provided focus for the topics in this book and in some cases the actual physical material. Several chapters include topics I have covered before, and in these cases I have added and updated information. The current book is an effort to provide a comprehensive review of the most important breakthrough therapies for Parkinson’s disease. Interestingly, these topics overlap with the most asked questions by patients and caregivers. The unexpected runaway success of my first book, “Parkinson’s Treatment: 10 Secrets to a Happier Life,” has provided hundreds of messages and an ocean of feedback from patients, families and researchers. The majority of comments I received on the first book were focused on the need to understand breakthrough therapies and approaches. My desire is that this book will fill a knowledge gap and will provide hope and valuable knowledge to those in the Parkinson’s disease community. Here are some of the topics that will be covered in the 10 Breakthrough Therapies for Parkinson’s Disease book released September 1, 2015: · Disease Modifying Drugs and Biomarkers · Coffee, Tea, Exercise, Interdisciplinary Teams and Caregivers · Extended Release/Novel Delivery Systems for Parkinson’s Disease Drug and When to Start Drug Therapy · Marijuana and Synthetic Cannabinoids · New Drugs for Hallucinations, Sleep, Constipation and Dizziness · Therapies While Hospitalized and Avoiding Hospitalization · Advancing Deep Brain Stimulation Technology, Earlier Intervention and Dopamine Pumps · Stem Cells and Stem Cell Tourism · Prions, Spreading Proteins, Vaccines and Growth Factors · The Drug Development Pipeline
  16. http://www.parkinson.org/getdoc/8bd01af3-2b45-4ea6-9b65-827da9b893d4/default So, what are you waiting for?
  17. I just found out about Smoveys. They were invented by a swiss tennis teacher who has PD. He noticed that swinging his tennis racket made him feel better. He experimented and developed a hand held exercise tool. Smoveys basically are ring shaped plastic tubes containing metal balls. You have to swing them around, to get the balls moving in the tubes. The balls movement make the rings vibrate. Its claimed that these vibrations are doing something. I had a change of trying them out and I find them helpful. I do lots of armswings daily and these rings make this exercise more efficient. Its not just having light weights in your hands, which also increase armswing, the moving of the balls do something extra. I'm sceptical about health claims of vibrations and all of that but moving these things feels good, and thats what counts. Check them out, there are lots of exercise videos (most Swiss) with these Smoveys on youtube. http://www.smovey.com/
  18. New to the forum so I'll start with an intro. 30 year old Canadian living in China. Diagnosed a year and a half ago. Symptoms began over three years ago. No medication to date but considering starting to take Amantadine soon. I was doing pretty well until recently when some personal problems started to impact my progression. I realize now, especially living so far away from home and family, that I need contact with other people who might be dealing with PD to help me through this. So I've come here. I have a lot of questions and would appreciate any help I can get. 1. Exercise - As I've seen time and time again, exercise is vitally important to helping manage PD. I exercise regularly and if nothing else it definitely helps my mood. But I do notice that many exercises exacerbate my tremor while I am doing them. Should I discontinue doing those exercises or just fight through them? Should I cut down on weight lifting? Core and balance exercises in particular give me the shakes, though I continue to read of their importance, should I just persevere? 2. Caffeine - I've read a lot about the positive benefits of Caffeine. However, much like my exercise problem, I notice that caffeine also makes me shake more. Again, should I ignore the symptoms and drink coffee or green tea anyway because of their potential long term benefits or should I stop drinking them? 3. Diet - Turmeric. B12. Antioxidants. Q12. Magnesium. Calcium blockers. L-Tyrosine. Vitamin D. It goes on and on The list of recommended supplements is seemingly never ending. I've been advised by my specialist in Canada not to worry about them and just make sure I eat a balanced diet. Plenty of fruits and vegetables. Needless to say, it's all a bit confusing. Anybody have anything more definitive I could take a look at? 4. Retreat - I'm planning at some point in the future of going on a Parkinsons retreat of sorts. Some place where I can go for a few weeks or months and just focus on how best to manage this disease. Ideally somewhere warm with a beach where I can consult with physicians and dietitians and physiotherapists and learn how to ensure that I maintain the highest possible quality of life. Anybody know if such a place exists? 5. Isradapine - Is anybody involved or participating in the ongoing clinical trial on Isradipine? Any results, preliminary though they might be, that can be shared at this time? 6. China - I live and work in China, I've been here for four and a half years, I speak the language and have a good circle of connections here. I'm looking to see how I can help make a difference to people with PD here. I've visited a number of specialists here and have come away feeling that they are not always able to provide the best treatment to their patients. Anybody have any suggestions or know anyways that I could help bridge the divide between here and the west in terms of providing better patient care? 7. Biological determinism - I took part in the 23 and me study and it turns out that I have one of the variants associated with Parkinsons Disease. I have one copy of the N370S variant in the GBA gene. I've been told there is nothing I can really do with this information and that it does not effect how I manage the disease. That said, I'm curious to know what epigenetic factors might influence it, or have influenced it, and what does it say about how I will progress. 8. Online - In addition to this forum, what other forums should I be following for PD related information? That's it for now, thank you for taking the time to read it and if you have any information that you think might be useful please share.
  19. I have now been drug free for over a week, after SLOWLY titrating my self down and off of Mirapex. I was concerned that the Mirapex was increasing my fatigue. So far, I am staying awake about 3 hour longer in the evening; my sleep is less fragmented; and I am a less fatigued during the day. The down side is that the dreams have all but stopped, which is not good. As for other symptoms, my tremor has slightly increased and rigidity is slightly worse when first getting up in the morning and after sitting for a long period of time. Fortunately, my rigidity was already significantly better due to my aggressive exercise program. My plan at this point is to continue the aggressive exercise program and to remain drug free. The exercise program has done more for my PD than the Mirapex ever did.
  20. Today rec'd this and encourage any of you wanting to be inspired, motivated and encouraged to live life with victory with PD to get this DVD. It is free from the Davis Phinney Parkinson's Foundation. "Thirteen men and women of different ages, living with various stages of PD, demonstrate a range of exercise routines and share their inspiring personal stories, offering encouragement, and first hand insight into getting started and sticking with it. " I would give you link but lost whole thing when I tried so you'll have to google it. My first rendition was full of accolades and blow by blow description of whole tape with "Rocky theme song playing in background. Great to view even if you already are a die hard exercist...not to be confused with exorcist! Micki
  21. Dr. Okun - I do understand that everyone's PD progresses differently. However, as someone with YOPD, symptoms since 2009 and diagnosis in 2012, now age 49, I have been taking Requip with Azilect and amantadine for two years now. Only recently have my symptoms worsened, so that now I have a number of breakthrough symptoms such as tremor, leg dragging, insomnia, foot cramping, a number of dystonias, and so on. I am a runner, but that ability has been noticeably cut back by the gait issue. What factors do you consider concerning the "right" time to switch to Sinemet from DAs? I am very, very concerned about getting dyskinesias because I think I hit 3 of the 4 risk factors - white, female, thin, with the missing 4th being dose of Sinemet. And once you're on Sinemet, is there no going back to DAs if dyskinesias get bad? Thank you.
  22. I wear a pedometer too and wonder how many steps Parkinson's patients are taking. On a typical day, I have about 6,500 to 8,000 steps. On Saturdays, when I exercise (airsoft), I get much more. Yesterday, I had 16,020 steps, almost all of which were carrying 30 pounds of equipment.
  23. I have been on carbidopa/levodopa 25/100 for over a year. Symptoms for 8 years, diagnosed over a year ago. 8- 10 pills per day. When I first wake up I take 1 1/2 and in an hour I feel as tho' I can move a mountain. I either exercise or clean like a maniac or both while I can! I eat oatmeal bar & oj late a.m. Oh, & I usually sleep soundly from around 1am (1 pill) until 6:30 am. I can work or exercise like my old self for about 3 hours & the rest of the day I barely get 1 1/2 hour out of med.....I can walk, care for myself & do basic "stuff" 24/7.....(thank you GOD for that), but the energy is not natural (i have to talk myself into it).....I also get "squirmy" in the legs before I start shaking & before it's time for a pill. I tutor in the afternoon & eat very little during the day, because I know my med will NOT WORK AT ALL WITH FOOD. I usually take 1 1/2 - 2 pills about 45 min before tutoring & SIT DOWN! I tutor for 4 hours & start getting shakey...if I can I wait until students leave to take 1 1/2.....I am usually alone at supper time so eat sandwiches, fruit chips etc. To keep on weight I snack when I think I can get by with it...... however, I do not gain back the full relief I experience in the mornings until my (1 1/2) 10 o'clock p.m. pill. I am going thru' ENORMOUS personal issues right now (husband is seeing someone, money etc), and I notice that I have a terrible time controlling symptoms when he is around or I hear anything negative concerning him or general day to day drama. (I am the "go to" person for my adult children, family & friends). This is going to sound weird...but my husband is actually mad and disgusted with me for having this condition!! I know the topic was EXERCISE & C/L.....but I thought background would maybe give you some insight. So here is the QUESTION...... If a dose does nothing to improve symptoms, does it hurt to take another? I'm thinking if it isn't working it went through my system and totally missed the brain, & doesn't count??? I just can't believe there is not a way to get more productive hours per day out of med......I know I am rambling, but I'm in a hurry......thank you for being here.......GOD BLESS '
  24. Registration is now open for two Parkinson’s wellness retreats at the Kripalu Center for Yoga and Health in the beautiful Berkshire Mountains, near Stockbridge, Massachusetts! Spring Program: June 15-19, 2014 “Navigating a New World: Wellness Retreat for People Living with Parkinson’s and Their Care Partners” This program (PD-201) is designed for patients who have been diagnosed for more than 3 years. Fall Program: October 19 – 23, 2014 “Navigating a New World: Wellness Retreat for Recently Diagnosed Parkinson’s Patients and Their Family and Friends” The autumn program is designed for patients who have been diagnosed within the last three years. For more information, please visit www.parkinson.org/retreat or please contact our helpline at 1-800-4PD-INFO (800-473-4636) or by email at helpline@parkinson.org
  25. We have been observing an alarming number of patients presenting to the clinic who have been placed on "forced exercise bike" programs by personal trainers. Here are some tips to stay safe with biking and Parkinson's disease.