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  1. http://www.bbc.co.uk/news/health-31585299
  2. Hello, I'm new to the board ... My mother was diagnosed with PD in 1998, had the DBS system in place by 2001. Last Monday night she called me and said something was wrong and asked me to come over. When I got there, she looked like a puppet on a string. Jerking, tremoring hard and spasming. Now, I had been there only two hours before and noticed only her leg tremoring. Now, it was so much more. Her speech was slurring and it was like she couldn't get the words out. I thought she might have had another stroke (Aug 2013). I tried to reach her neurologist and all his service said was to take her to the ER. So I did... They couldn't do anything for her and we sat there for six hours before they brought that info to us. By that time, the tremoring/spasming had slowed down or had all but stopped. When she laid down, her body didn't seem to have such issues. I called the neurologist the next day and spoke with his nurse. She told me to start my mom on 1/2Sinemet (quick release 25/100) three times a dayand still have my mother take the Sinemet (controlled release) at 2 tablets, three times a day. If the tremors/spasms got worse, then have her take an extra 1/2 sinement (25/100) if it got bad. Well, we have... Tuesday: no issues (other than light tremoring), Wednesday: no issues (other than light tremoring), Thursday: no issues (other than light tremoring).... though Friday, Saturday and Sunday, she expierenced the same jerking/tremoring/spasming. Usually it started about 6-7pm, on Sunday at 3pm but she admitted she didn't take her meds on time. I was with her Sunday night and I noticed she kept hunching her shoulders, wiping her nose/mouth and cursing softly. I don't know what to do... I'm her only child and there is no one in the family that will help me. I have two children and a husband, a job.... What is going on? Why did this come on so suddenly? What else do I need to tell the doctor? He wants to wait to see how the Sinemet 25/100 does... we have an appointment on March 24th. Help please???
  3. patticee203

    Second Opinion?

    I am asking the group if I should see a movement disorder specialist for a second opinion. The neurologist I saw 3 months ago, and who I just followed up with gave me some very confusing and I think conflicting diagnosis. When I saw her 3 months ago, she said for sure I had small vessel disease, may be having TIAs and probably had Parkinson's because I had a lot of symptoms. When I saw her again this week, she was trying to tell me that my only problem is essential tremors, and she doesn't know why I fall a lot or have lost my sense of smell. Plus my balance is very poor, tremors have increased in the past 3 months. She's working off a brain MRI from 18 months ago, and has done no other tests. It sounds as though Parkinson's is difficult to diagnose - but I do have a cluster of symptoms that are troublesome enough to effect my everyday life. Tremors of hands, head and voice. Loss of smell. Memory word-retrieval problems, frequent falls, don't swing arms, pronounced balance problems, weakness on the left side (TIAs, Strokes??). I know you can't give medical advice - but should I just make an appointment with a movement disorders doc at a big teaching hospital? I would think that they would want some tests more recent than 18 months old. Thanks for listening to me babble. PattiCee
  4. Happy new year to all! You're favorite pharmacist is back for another year behind the intergalactic pharmacy bench and is ready to answer you're questions. First off, I would like to clean up some old business. A friend of mine from across the pond, Miss Lisa Vanderberg, sent me this Public Service announcement that has been circulating around. I have seen it, I like it, it is to the point, and it is true. I hate to say this but, many of the donors that put money into the NPF, or other Parkinson's organizations, are people who either have PD or know someone who has PD. My challenge is simple. So simple it hurts that I did not think of it earlier. How many people heard about the girl who sold Girl Scout Cookies outside of a legal medical marijuana dispensary? Was that a no brainer or what. Now, I am neither condemning nor condoning the use of marijuana, what I am doing is applauding the entrepreneurial skills of this girl. BRAVO! Now we, meaning us with Parkinson's, are kind of tired of chipping into our own till all the time to help "us." If you think of it, we already are putting our money in the till. We pay for Dr visits to a Parkinson's Dr, we pay for Parkinson's medication, we pay for things to help us around the house (canes, lift chairs, special beds, holders for the bath tub, etc). My challenge is this: I would like for everyone out there who belongs to a non-Parkinson's organization, to get just 1 person to donate $1 to the NPF. This way we are going outside of our group to get help for us and for you. Below is the link to the service announcement. Please, copy and paste it and send it to the other organizations you are in, you can even include it with you're emails, or if you know someone who owns a company, have them put this on their outgoing email. I know we can do this. We are off to battle Parkinson's Disease, and I would bring everyone of you with me. Why? Because you are strong, you persevere, you are head strong, and you are fighters. The best part is, we do it every day of our life. In fact while I was writing this, my insurance agent called, and I figured I would throw it by him. I figure, I give him money, the least he can do is donate $1. I walked him through the steps to get to site and where to donate, and BANG....we just got $10 bucks. It's time to fight for us, so copy this link below, and feel free to pass along you're success stories. Heck, pass along any story that worked. Let's get it on people! The challenge starts now, and does not stop. Good luck! https://www.linkedin.com/pulse/we-forgotten-patients-lisa-vanderburg
  5. New Parkinson’s book aims to help patients & caregivers around the world Many of the valuable resources available to help patients with Parkinson disease are only available in English. In a new book Parkinson's Treatment: 10 Secrets to a Happier Life translated into over 20 languages Michael S. Okun, MD, the National Medical Director of the National Parkinson Foundation and the Co-director of the University of Florida Center for Movement Disorders & Neurorestoration, aims to help patients live well with Parkinson disease. “Parkinson’s Treatment: 10 Secrets to a Happier Life” is available as an ebook for $3.99 on Amazon.com and Smashwords.com (also available paperback on Amazon). “Almost nothing is available to patients about basic lifestyle things in any language but English. Even in the most educated patients, who have access to everything, there are still lots of very simple things they aren’t doing. There are lots of things you can do to improve your quality of life.” – Michael Okun, MD The new book discusses topics including medications, depression, hospitalization, exercise and more. Read the UF & Shands News article about the book . . . Visit the website that accompanies the book . . .
  6. A.Legato

    Poem from a loved one...

    I've been watching my dad decline over the years and am so thankful his condition hasn't progressed as quickly as it could have. My mother takes the most amazing care of him, which has affected her health as well. My dad was a hands-on dad that I have so many wonderful memories with. I wanted to share a poem I wrote for him in watching his decline over the years. I expect many of you loved ones feel the same way. Parkinson's Mask Watching you grow older, Grows more difficult each day. Think back to childhood memories, Now seem so far away. Used to hold my bike steady, Now hands constantly shake. Used to have a sharp wit, Now here and there, it will wake. Used to fix what was broken, Now mobility minute. Used to have a strong voice, Now almost as if on mute. Used to push me on my swing, Now I push you in your chair. Used to make silly faces, Now your face, a vacant stare. Watching you grow older, Grows more difficult each day. Memories I’ll always cherish, As this disease has its way. © Andrea Legato
  7. Just thought I would pass this on to all of you. Please feel free to ask about the study, but not about my personal opinion. Thank you. Study: Inhaled Cannabis Relieves Symptoms Of Parkinson's Disease Thursday, 20 March 2014Tel Aviv, Israel: Inhaling whole-plant cannabis provides symptomatic relief in patients with Parkinson's disease (PD), according to observational trial data published in the March/April edition of the journal Clinical Neuropharmacology. Parkinson's is a progressive disorder of the central nervous system that results in tremor, slowed movement, and muscle rigidity.Investigators at Tel Aviv University, Department of Neurology evaluated Parkinson's disease symptoms in 22 patients at baseline and 30-minutes after inhaling cannabis.Researchers reported that inhaled cannabis was associated with "significant improvement after treatment in tremor, rigidity, and bradykinsea (slowness of movement). There was also significant improvement of sleep and pain scores. No significant adverse effects of the drug were observed."They concluded: "[T]his observational study is the first to report an amelioration of both motor and non-motor symptoms in patients with PD treated with cannabis. The study opens new venues for treatment strategies in PD especially in patients refractory to current medications."Israel has formally allowed for the licensed production and distribution of the substance for therapeutic purposes since 2011.For more information, please contact Paul Armentano, NORML Deputy Director, at: paul@norml.org. Full text of the study, "Cannabis (Medical Marijuana) Treatment for Motor and Non-Motor Symptoms of Parkinson Disease: An Open-Label Observational Study," appears in Clinical Neuropharmacology.
  8. My short history: 47 year old, male, diagnosed with PD in 2002, taken medication since 2007, very athletic until 2012, recently had several non-epileptic seizures; also find myself on the floor near my bed in the morning once every month or so. 5 months ago, I managed to dislocate (and self relocate), break bones and tear muscles in left shoulder but don't remember any of this activity. My Issue: While speaking to someone, I forget what the main point I was trying to convey to them during the short conversation. I get in the car and forget where I intended to go. I miss the right turn to drop off my kids at school. I search for key words that are important to convey my thoughts during conversation. I have forgotten major periods of time in the past concerning all aspects of my life. I could watch the same Netflex movies two weeks in a row if my wife did not catch it and comment that we saw the movie last week. Does any of this sound familiar? When I visit my Neurologist, I mention the various new experiences with memory loss and he just gives me 4 or 5 simple words to remember during the session and at various points during the 20 minutes, he asks me to repeat them; I fumble a bit but can remember 4 of the 5. From this one test, he says "your memory is fine". I leave frustrated that even though, I struggle on a daily basis with memory issues that I consider serious, the doctor discounts this issue by saying "this is from Parkinsons, just deal with it". When I talk to friends, colleagues and family, they also don't believe there is much to it and that the memories will return. Questions for all of you: 1) Who believes that my memory issues are due to medication? I take Sinemet (25-100mg 7 to 8 tabs daily), and Entacapone (200mg x 4 tabs daily), and Bupropion (100mg x 2 tabs daily) 2) Who believes my memory issues are due to psychological issues like Conversion Disorder? (had some diagnosis in past but conflicting doctor opinions) 3) Who thinks it might be due to just sleep deprivation? (I get 4 to 5 hours nightly but not always solid) 4) Stress? (I have been building/growing an aerospace engineering and product based business for the last 6 years) 5) What about dimentia or mild cognitive impairment (MCI)? I've read that there are many stages of dimentia and MCI. I'd love some feedback especially concerning all of your experiences with memory (short term, long term)
  9. nicholersearch

    Get paid for your opinions!

    WEGO Health is launching a paid Truvio survey for the Parkinson's disease community next week. To see if this is the right fit for your diagnosis experience, please complete this form:http://vclz.co/1ndl7su
  10. Hello, I am researching challenges with pharmaceutical packaging, specifically, medications provided to patients with Parkinson's disease. We may all struggle with medications in child resistant packaging. As we get older, packaging can sometimes present a more frustrating challenge. For patients with Parkinson's, easy access to your medication should be the standard, but we know that is not always true. I do not have access to focus groups or human factor engineering studies on packaging, so I hope you can assist by sharing some of your experiences. Your feedback will be reviewed and I will promise that it will be heard. My questions to the community: What is your biggest packaging challenge or dose access challenge with your current medication(s)? (What drug?) How would you improve the packaging or access to each dose? I send all my support and well wishes to the community. Thank you in advance for your valuable feedback. Jonathan
  11. My husband has Parkinson's and dementia. With his dementia, he has some delusions and hallucinations. He was diagnosed in 2007 at the age of 55. He has been on a regimen of Stalevo 150 mg four times a day for quite some time. He is also on Azilect 1 mg and Namenda 10 mg twice a day and Aricept 23. He is about 75% urinary incontinent and beginning the journey of bowel incontinence. He continues to become so rigid that he doesn't want to sit down. His back does not bend and he is very stiff. It is almost like a back bend for him to sit down. To increase the Stalevo will definitely increase his delusions and hallucinations per the neuro. (Neuro said we could increase his Stalevo to 200 mg 4 times a day.) Also, we did increase it (150 mg 5 times a day) a few years back to help him with his rigidity and it was so bad that I was constantly trying to keep him from wanting to leave to meet people for meetings that he believed were planned. I called the doctor and we backed the drug down to 4 times a day (150 mg). My dilemma: It is up to me to make this decision because he doesn't complain, but I see how hard it is for him to bend and strain to sit on a toilet or chair. But, I am so concerned about the delusions and hallucinations. It was so scary before and I'm fearful of bringing back this person who is paranoid and afraid. Can anyone tell me how they handle this type of situation? Prayers would be appreciated.
  12. Parkinson’s Treatment: 10 Secrets to a Happier Life is a compilation of essential information for patients and families facing Parkinson’s Disease. The author, Michael S. Okun, M.D., is a widely respected neuroscientist who enjoys an international reputation as a patient-centered neurologist skilled at distilling the complexities of life with Parkinson’s Disease into understandable pearls of wisdom for his patients. In 10 easy to read chapters, Dr. Okun reveals the important things that patients and families need to know. After reviewing the signs of Parkinson’s Disease, including the very important non-motor signs that are crucial in understanding the breadth of the disease’s effects, the first chapter explains why Parkinson’s is not Alzheimer’s Disease, Multiple Sclerosis, or any of the many disorders that it is commonly confused with. Timing of starting medicine, adding medications, and consideration of deep brain stimulation (DBS) are covered in the next few chapters. The role of depression and anxiety, sleep disorders, and major side effects of medicines are covered well in the middle chapters. A later chapter deals with the importance of vigorous physical exercise and why it is essential as a treatment. This often underappreciated role of exercise as medicine is crucial to living well with Parkinson’s, and may even slow disease progression. A full chapter on being prepared should you need to go into the hospital provides essential information for the patient and family to provide to hospital staff that might otherwise overlook or not know of the needs of Parkinson’s patients. This is followed by an explanation of drugs that interfere with Parkinson’s Disease treatment, including commonly used anti-nausea and behavioral medicines. A full chapter is devoted to emerging treatments and current research areas of focus, and while reasonably comprehensive and well written may be a bit technical for new Parkinson’s patients. If you find this is true, just skip that chapter for now, and come back to it in a few months, when the huge amount of new information you will gain from this book has settled and assimilated. The final chapter is only two pages long, but they are the most important two pages in the book. Here Dr. Okun passes on wisdom gained from years of empathetic engagement with his patients – clearly he has been listening to them, and here he offers a dozen or so tips for successful living despite the unwelcome intrusion of Parkinson’s Disease in our lives. Outstanding advice such as “Do not be defined by the disease” and “Develop a vision for who you want to be and live that vision” provide important mantras for us to remember each day and are essential in allowing us to thrive with and in spite of Parkinson’s Disease. This book covers essential knowledge needed by Parkinson’s Disease patients and their families, and can even be useful in helping your physician to understand the disease and what it is like to live with it. It should be “required” reading for all of the above people. After reading this book you will feel empowered in partnering with your physicians as you “live your vision” and let Parkinson’s Disease be the loudmouth bystander that it is, not the leader of your life. Review authored by Anthony Geraci, MD, a physician living with Parkinson’s Disease.
  13. While in the US Navy from 1976-1980 I sustained a facial/head injury. I momentarily lost consciousness‎. The left zygomatic bone, arch and check were severly cruched resulting in major reconstructive surgery. I continue to have problems with the sinuses, some headaches and maybe a couple other very minor things. The VA did give me a less then 10% disability rating, which at the time was fair. I am now 56 years old and was diagnosed with PD at 48. I have great Doctors at UCSF, DBS went well and the PD is as under control as it gets, for the momement. My concern is when time come to retire I may need help with costs of care, treatment and income. If the PD is related to the head trauma it might be covered by the VA. My question: Are there suffient studies tying head injuries to PD that make it more than a wild goose chase to request the VA to make a coverage determination? I do not want to waste their time and money nor my time. In large degree I am not sure I want to prusue this as our men and women are coming home really injured. I have a son who came home with a 40% disability. But, I am unsure of my future. Thanks in advance for you comments regarding the studies. Should you wish to comment on my dilemma please feel free to do so. Dave
  14. Sleep_Paralysis

    Telling a 'new' romantic interest...

    The title may be misleading. Some background: I am quite young. You could say just enough that a diagnoses would not fall under 'juvi PD'. That's about as much as I'd like to share about my age. I suspect I have parkinsons. My father has it. Family doctor is concenred, blood test + CAT scan done (no results shared yet) sleep study, neuroligist apointment upcoming probablly in a few weeks time. I won't worry anyone with my list of symptoms, as many of you I'm sure are familiar with them. Suffice to say my movment has become very stiff, and negotiating anything with my left hand is becoming increasingly difficult.. I can barley keep anything down, and my balance has suffered to the point I have almost fallen a number of times, usually however due to carelessness. ( I guess I did list some symptoms huh?) I know many of you will say "Dude, you don't even know if you have PD" but lets assume that I probablly do, where to go from here? I'm sorry about the long post... I'm just unsure of what to do. Thanks, SP
  15. I've been taking Protandim for about 3 months to treat my Lyme Disease and my Lyme Disease Specialist thinks that it will help my Parkinson's Disease also. Protandim is a NRF2 synergizer that has been shown to reduce oxidative stress by 40% in 30 days. I'm wondering if anyone else is taking this for their Parkinson's and what your experience has been? The only issue I've had with the Protandim is that at the full dose (1 caplet per day), my resting tremor is significantly worse. At 1/2 the recommended dose (1/2 caplet per day), my resting tremor is the same as when I don't take any medication at all. Therefore, my Lyme Disease Specialist has me on 1/2 caplet per day at least until I see her again in November. My Lyme Disease Specialist is both a Medical Doctor (MD) and a Naturopathic Doctor (ND) and got her undergraduate degree in Chemical Engineering. She is VERY SMART. Here are a couple of articles on NRF2: http://www.nrf2.com/michael-j-fox-foundation-awards-an-additional-grant-for-nrf2-research/ http://www.nrf2.com/parkinsons-nrf2-research/
  16. Does anyone in this forum still ride? It's going to be my final stand. Meaning that is what I am hanging onto the most. I mean I have more important reasons to stay strong , my husband, my kids etc... But this I do for me which makes me better for them, anyway, I'm trying to talk with other riders but its hard to find any. I started a FB page called Shake, Rattle and Ride;). I also know the therapeutic benefits of just being around horses is huge. They don't care what you look like or your trembling or that your in a chair, they usually just like the fact that someone is petting and scratching them. Well horse people let me know if your out there. I'm going to go ride now:-)
  17. cureparkinsonstrust

    parkinsons e-petition

    The Cure Parkinson's Trust has launched a nationawide online petition to urge the government to invest in new research to help find a cure for Parkinsons. We need to secure 100,000 signatories in order for the issue to be eligible for consideration for debate in the House of Commone. Please suppot us by signing the petition, by going to http://epetitions.direct.gov.uk/petitions/45963
  18. Lee Meddin

    Parkinson's News

    Hello everyone, Lee Meddin here, diagnosed in April 2010. I have created a news aggregate website at www.parkinsonsnews.com; I personally comb the internet for timely and relevant news and blog entries that would be of interest to the general Parkinson's community, mostly the latest research (but also including new therapies, people profiles, innovations, etc.). Lately there has been some VERY promising research for PWPs so visit www.parkinsonsnews.com and join in the optimism. Email me at lee.meddin@yahoo.com to let me know what you think of the site, make suggestions, and forward news items that you find. Thank you all--keep the faith. Lee
  19. Daniel Parris

    Parkinson's survey

    Hello everyone. I'm a senior in college working with a client who has an excellent idea for a device to assist people living with Parkinson's Disease. To help work with him, one thing we have done is create a short survey to see what features would be useful for his product and things of that nature. If any of you could take the time to complete this short survey (should take no more than two minutes), you'd be helping us out, as well as our client and hopefully all of those struggling with Parkinson's Disease today. Any and all responses we can get are helpful. Thank you for your time, and by all means, feel free to share this survey link. Take care and have a wonderful day. https://wcu.qualtrics.com/SE/?SID=SV_aga7juJWNOGRVpH
  20. New Parkinson’s book aims to help patients & caregivers around the world Many of the valuable resources available to help patients with Parkinson disease are only available in English. In a new book Parkinson's Treatment: 10 Secrets to a Happier Life translated into over 20 languages Michael S. Okun, MD, the National Medical Director of the National Parkinson Foundation and the Co-director of the University of Florida Center for Movement Disorders & Neurorestoration, aims to help patients live well with Parkinson disease. “Parkinson’s Treatment: 10 Secrets to a Happier Life” is available as an ebook for $3.99 on Amazon.com and Smashwords.com (also available paperback on Amazon). “Almost nothing is available to patients about basic lifestyle things in any language but English. Even in the most educated patients, who have access to everything, there are still lots of very simple things they aren’t doing. There are lots of things you can do to improve your quality of life.” – Michael Okun, MD The new book discusses topics including medications, depression, hospitalization, exercise and more. Read the UF & Shands News article about the book . . . Visit the website that accompanies the book . . .
  21. daniscott

    Correlational study

    Hi! I'm doing a correlational study in regards to Parkinson's disease and childhood insomnia. If you could please fill out the survey in the link it would be very helpful, and very much appreciated. https://www.esurveycreator.com/live.php?code=899fd60
  22. Hello Dr. Okun, I am a 56 year old female. Three months ago, I put 2 lb. wrist weights on each wrist and exercised my arms lightly for about 10 mins. I typically do this every other day using barbells. But on this particular day, I added the wrist weights. During that week, I noticed my left thumb and index finger would tremor for several seconds whenever my arms were rested. That same week, I was awakened from sleep by the action of my left thumb and index finger on my pillow. Three months have passed and my left thumb continues to tremor when I position my arm on an armrest or when my wrist is bent. My left index finger will tremor when my hands are folded on my lap, but only for a few seconds. In addition, there is an almost constant "twitch" that can be seen between my index finger and thumb when resting. Some other observations that may or may not be significant are I often find myself walking with my left arm flexed in front of me with my hand just hanging. (But I have no loss of arm swing whatsoever otherwise. No stiffness, no slowness.) And, prior to the onset of tremors, I noticed a rather pan-faced appearance when I look in the mirror. Perhaps, it is just normal aging!? My question to you is does this sound like the beginning of Parkinson's? Or might I have damaged something with the weights? (I have absolutely no pain, numbness, tingling etc.) Should I wait to see if other symptoms pop up before seeing a movement disorder specialist? In other words, is it too early for a diagnosis? I am grateful for any advice you can give me.
  23. On the advice of my neurologist I'm going to try receiving testosterone pellets to relieve some of my Parkinson's symptoms, especially fatigue, depression, anxiety, sense of well being, etc. I would like to hear opinions on testosterone as a Parkinson's disease therapy. My testosterone number was at the low end of normal. I am a 57 year old male.
  24. Hi doctors, Is the onset of ED in Parkinson's generally gradual or sudden/overnight in your experience? Wouldn't ED caused by a neurological condition develop insidiously and slowly over time?