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Found 13 results

  1. The 10 Breakthrough Therapies and Treatments to Watch in 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. “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.” ― Ifeanyi Enoch Onuoha There are several potential breakthroughs that should be on every patient and family member’s radar screen. Here is a list for patients and families of potential Parkinson breakthroughs to watch http://parkinsonbreakthrough.com: · Disease Modifying Drugs and Biomarkers- these are drugs that may slow Parkinson’s disease progression; also imaging and fluid (e.g. blood, spinal fluid) markers that can track the effects of Parkinson’s drugs are needed and under development · Coffee, Tea, Exercise, Interdisciplinary Teams and Caregivers- there is mounting evidence that these approaches have symptomatic and perhaps even other benefits in Parkinson’s disease · Extended Release/Novel Delivery Systems for Parkinson’s Disease Drug and When to Start Drug Therapy- Parkinson’s disease desperately needs longer acting drugs to reduce the “number of pills” burden · Marijuana and Synthetic Cannabinoids- surprising to some experts has been the revelation that there are cannabinoid receptors in the brain and tickling them may be beneficial to some Parkinson’s disease symptoms · New Drugs for Hallucinations, Sleep, Constipation and Dizziness- these problems are vexing for patients and caregivers, but several new drugs are poised to make a difference · Therapies While Hospitalized and Avoiding Hospitalization- we now know that the hospitalization risk is very high in Parkinson’s disease, and that hospitals can be dangerous places for patients; the focus needs to shift toward avoiding hospitalizations · Advancing Deep Brain Stimulation Technology, Earlier Intervention and Dopamine Pumps- the technology has been refining our approach to the symptomatic management of Parkinson’s disease and new therapies are now reaching the bedside · Stem Cells and Stem Cell Tourism- there has been a shift away from the idea that stem cell transplants will cure Parkinson’s disease, however stem cells are proving powerful in drug screening · Prions, Spreading Proteins, Vaccines and Growth Factors- several novel approaches are in trial, and a Parkinson’s vaccine may be on the horizon · The Drug Development Pipeline- understanding the drug development pipeline will help patients and families to gain access to the newest Parkinson’s disease therapies Check out the new book 10 Breakthrough Therapies in Parkinson's Disease at www.amazon.com http://www.amazon.com/10-Breakthrough-Therapies-Parkinsons-Disease/dp/0692497412/ref=sr_1_1?ie=UTF8&qid=1443354908&sr=8-1&keywords=parkinson%27s+disease+and+okun
  2. Hello, first post for me as I recently have overcome the "denial" phase and am "coming out" about my diagnosis I received as a 36 year old man, almost 3 years ago. My first symptoms showed up as a small tremor in my left index finger and an overwhelming feeling of anxiety. I chalked it up to the affects from an unwanted marital separation and stresses of losing my wife and the ensuing divorce litigation and custody battle of our 1 year old daughter. Those things have since stabilized, but my PD has not. The small tremor has now taken over my left arm and shows itself on my right side occasionally as well. I move noticeably slower and have trouble with little things like typing, tying my shoes, eating, etc. I initially visited 2 doctors in my hometown, Springfield, IL. Since I was in denial, I felt almost offended that they both immediately wanted to put me on medication, as though they were driven by the pharmaceutical companies. I reluctantly started Azilect, only in hopes that it would hide my tremors. After about 3 months I didn't feel much difference and decided to stop it and find another physician. I found a God-sent Angel of a doctor, Dr Dyveke Pratt, in Peoria, IL. who did not push medication on me and instead prescribed cardio exercise, healthy diet, and less stressors in life. As symptoms progressed, we did decide to try Mirapex, to which I did not see relief. Admittedly, I am not a good prescription pill taker and probably did not give it a true test. Upon that realization, Dr. Pratt and I decided to once again eliminate medication. She prescribed me with 6 months of daily physical exercise, getting my heart rate above 130bpm for 30 minutes, every day. It's been 3 months and I haven't missed a day. I'm in great physical shape, but my tremors have gotten worse, and symptoms are progressing. Now I find out that Dr. Pratt is leaving the INI practice and I have no inclination of where she is going. I feel that medication is in my near future but am scared to death of it. I do not want to start Carbidopa/Levodopa, not yet. If that's the "big gun", I want to wait until I can't live without it. So, I'm in search of a physician in or near Central Illinois, and am open to any thoughts, advice, experiences, or questions from anyone listening... Thank you
  3. Hello, I am studying design and technology in year 11 at Catherine McAuley High School and am currently designing a product to enable those who are diagnosed with Parkinson's Disease to live a more independent life. My main focus is on designing a tool which makes the everyday task of hanging out the laundry much easier. The following questions are part of my research in order for the design to suit personal needs and be successful in improving the lives of those who suffer from Parkinson's. Any questions that you don't feel comfortable completing can be left blank. https://www.surveymonkey.com/r/X8BHVC5 If there are any problems or queries feel free to message me x
  4. I went to a training with David Zid (creator of the Delay the Disease program). Wow! He is impressive! His theory is that most of the problems we have with PD are the result of bad habits. For example, people that get stuck are practicing the behaviors of being stuck. By changing that habit to a technique that gets them moving, he can stop people from being stuck. He had the class practice techniques for getting unstuck; getting up smoothly from a chair; exercises to improve fine motor skills; methods to return your writing to normal; methods to get rid of that PD mask, etc. My main purpose in going to the class was to ask him if there was anything that could be done about my tremor. To my surprise, he said there was. He said to decrease the tremor, I needed to do weight training and the key is that I need to do it with a heavy enough weight to reach exhaustion/failure within 5 to 25 repetitions (10 to 12 would be ideal for me based on my age). For example, if I was doing curls, the weight should be high enough that I should only be able to do 10 to 12 repetition before my bicep would give out. I will be starting tomorrow! I'll let you know how it goes.
  5. I've looked through old posts and found discussion of Adderall as a possible treatment for fatigue. I'd appreciate knowing if there is any more current information. My wife has PD and suffers mostly from fatigue, enough so that walking several blocks is often too much. The fatigue seems to markedly increased by exercise such as that short walk. We're hoping for some relief. She tends to be highly sensitive to medications. Her current PD Medication She is on CD/LD 3x(25-100mg)/day We tried an antiddepressant (escitalopram 5mg) but are on hold with it because of a nausea reaction
  6. Trans PD

    First, I've got to apologize for promoting exercise. It's true that until now, exercise has been the only thing to slow the progression of PD/PD symptoms. However, this morning I discovered the cure while watching CNN - "TRANS PD". Here's how it works. If you're a man and wish you were a woman - you simply declare that you're a woman and suddenly you are a trans-gender woman. If you're white but wish you were down with the black experience - you simply declare that you're black and whammo - you are a trans-racial African American. If you were born trapped in a healthy body but always felt you were disabled - you simply declare that you're disabled and hack off a limb or two - and you are suddenly a trans-abled victim. So, I decided that I don't have PD after all; declared myself to be healthy; and kaboom - I'm a trans-PD healthy person!!! Better yet, if you are healthy but always wanted to become the victim of an incurable, progressive disease - you can simply declare that you have PD - and you're a disease ridden, trans-PD victim worthy of great sympathy and pity (no MDS visit required). The great news is that whatever you are, you can be trans-something else!!! If you're ever asked if you are black, or disabled, or a woman, or white, or healthy, or have PD - just say "I don't understand the question!!!
  7. I am a pwp diagnosed 3 years ago at the age of 37. At first I accepted the diagnosis and figured no big deal not realizing that PD is a lot more than tremors. Now that my quality of life has been greatly impacted, I've decided it's not enough to take pills to alleviate symptoms but I need to take a more aggressive approach to finding ways to heal and repair my body. I've done a bit of research but I need some feedback from my fellow pwp. If any of you that have tried alternative/natural treatment options would please take a few minutes to answer a 10-question survey regarding these methods, it would be a great help. https://www.surveymonkey.com/s/SCGNGLR I would be more than happy to share the results. Also feel free to share the survey link. Thanks in advance and be well.
  8. This video describes a new Parkinson's protocol that has been used with incredible success - I completed the treatment 4 years ago and it really made a difference. Today they just released the video -- please spread it around! http://www.youtube.com/watch?v=gCHq_6oG2uI Thank you, Steve Alten, NY Times best-selling author and PD patient
  9. Hi. I am a 37 year old woman with a grandfather and father with Parkinson's. I feel as though I have early symptoms, but my doctors have brushed them off saying it would be unlikely as a woman in my 30's to have Parkinson's. I know that I have the same gait as my father and grandfather, and occasionally a resting tremor. My main symptom is when I get up from sitting I have to take 8-10 steps before I can raise myself straight up from a hunched over "L" position. I am in pretty good shape and work out, but I experience this being "stuck" whether I've worked out or not. I also feel like I have trouble swallowing at least a few times a day. I know I don't have very severe symptoms, but I wonder when I should really bring it up seriously with my doctor or see a neurologist. Any thoughts?
  10. 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 . . .
  11. 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 . . .
  12. 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 . . .
  13. Medical treatments to improve the symptoms of PD include pharmacological management and more recently, neurosurgical procedures such as the placement of an electrical stimulator in globus pallidus or subthalamic nucleus. Although there have been documented improvements in limb and axial symptoms with medical treatments, the improvement in speech has not been documented as consistently. The consensus is that medical management has a more positive outcome for limb movement than speech function (Kompoliti, Wang, Goetz, Leurgans, & Raman, 2000; Trail, Fox, Ramig, Sapir, Howard & Lai, 2005). Therefore, there is a strong need for people with PD to receive efficacious behavioral treatment from a speech-language pathologist to improve speech. The selection of any speech treatment should be based on the results of an individual evaluation. Specifically, stimulability testing of the impact of different treatment strategies on voice and speech characteristics will determine which treatment approach is most appropriate for a given individual. The treatment chosen should include principles of motor learning such as intensity of treatment and using salient (meaningful) materials in real speech tasks for treatment benefits to last. If you or a family member or friend have noticed a change in your speech then talk to your doctor about getting an evaluation from a speech-language pathologist. You will learn about your individual situation and can use this information to decide which treatment is right for you. Sincerely, Leslie Mahler, PhD, CCC-SLP
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