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Found 5 results

  1. Hi everyone: Let me preface this by saying I am a 30 year old man who is in overall good athletic shape (exercise 3-4 times per week before experiencing my symptoms, which started a few weeks after getting laid off from my job). I have had a couple visits with a neurologist and primary care physician since and although I have been diagnosed by a neurologist with Benign Fasciculation Syndrome (BFS), I believe I could be suffering from Early Onset Parkinsons Disease. Here's a recap of some of the key events as my symptoms have gradually gotten worse: August 9, 2017: While laying in bed in the morning shortly after waking up, I notice my left ring finger had a rhythmic left to right twitch that lasted for no more than 5 seconds and stopped upon moving my finger. Several times throughout the day it intermittently repeats the same involunatary motion. Two days later, I experience a similar sensation in the meaty part of my thumb on the same hand where I can actually see and feel the muscle contracting. About a week after that, I notice twitches throughout my body, typically stronger sensations as the day progresses. Twitches in body parts range from left tricep to legs on both sides (calf, quads, hamstring and even toes). I've even experienced some dystonia in my feet (stronger on my right foot where I can feel a great deal of pain in my foot and can visually see the muscle twisting). Around August 18, 2017 I start experiencing myoclonic jerks upon falling asleep. This, however, is nothing new for me as I've had isolated incidents of this in the past dating back to about 10 years ago, but now I have them every night and can't fall asleep unless I take an OTC sleeping pill. A week later, after being referred to a neurologist, I received a 30-minute evaluation that included a reflex test. Upon passing the reflex test, the doctor diagnosed me with BFS, but requested that I take a blood test (not sure what he was looking for, but I provided four samples). Two weeks later during a follow-up conversation with the neurologist he tells me that my blood results were normal, but I'm still not convinced they are. I tell him my concern is Parkinson's and he says that it is unlikely based on my symptoms and that he would give me the same diagnosis even if I was 70 years old. Aside from the twitching and cramps, I don't have muscle weakness or extraordinary pain. Sometimes after exercising my shoulders will have some General soreness or stiffness, but that is only if I'm exercising those muscles. I do have some pain below my knee in the peripheral nerve that radiates to my ankle/foot, but that pops up in the late afternoon/evening. Sometimes I will feel dizzy or woozy and I've experienced a couple debilitating headaches, but this is nothing new. My family does not have a history of Parkinson's aside from a Great Aunt, but I do have a history of concussions dating back to when I was 8 years old playing football. My last significant head injury was in college about eight years ago and I'd say I've had at least a dozen of them in my life, which has resulted in frequent migraine headaches and difficulty concentrating at times. I also suffer from a sleep disorder where I will sleep walk and sleep talk (usually after a night of drinking). This started in my childhood. Based on this background info (I tried to be as detailed as possible, but I'm sure that I'm omitting others), does this sound like Parkinson's to you? Do you recommend getting a second opinion from another neurologist? Movement disorder specialist? As each does goes by, it seems like my stress level keeps increasing with the symptoms only getting worse. I'm only getting less sleep and much of the day is spent worrying. FYI: Here's what my finger twitch looks like: Thanks, in advance for your concern and responses!
  2. high cost of stess

    I just started reading the book "When The Body Says No - The High Cost of Stress" and will post more. This link is a reviews plus the first chapter, plus a video.... http://drgabormate.com/book/when-the-body-says-no/ http://drgabormate.com/book/when-the-body-says-no/ http://neuronovacentre.com/blog/book-review-when-the-body-says-no-the-cost-of-hidden-stress/
  3. Broken Heart

    Hello Tonight I have cried until I have nothing left. I have been crying at the change in my husband, the man I knew has disappeared into this PD black hole. I can't blame it on meds this time, it is the disease. Somewhere locked up inside he resides, but I haven't seen him in weeks, oh he is here with me, I can see him, but that is all. Friends, what a joke they are, always giving advice, but never offering to help, and then one by one they disappear, no more emails, or letters, or phone calls. Their reasons.......I just must be to busy to want to talk. Fine then I say, just go away! Truth is, they don't want to hang around with someone who is devoted to their spouse, just put him away they say, get on with your life. Then I have to hold my tongue, when I would like to just tell them what is really on my mind, what I really think of them.. I have decided that people are cruel, truly cruel, no one gets it, not because they can't, but because that don't want to. Lazy and worthless! I cry for a life I have lost, a life my husband has lost, a life we have lost together. Caregivers get it, I know that, but we are all so busy, trying to work, trying to do it all, is it really so much to ask of "normal" people to just spend a little bit of time with a caregiver, just to be there. Then I think maybe something is wrong with me, that I am not a nice person to be around, that something is wrong with me. Sad part is I think maybe there is now, maybe I am the one that no one wants to be around, maybe I have just lost myself in the role, I don't think so, but who am I to judge. I do know that my husband is part of me, and I a part of him, we are one, and my heart continues to break. Don't tell me that tomorrow will be a better day, there have not been better days in a long time. I despise this disease, and I despise even more that it continues to progress, and nothing I can do or say will slow it down. Tomorrow is another day, but nothing will be different, not for my heart anyway. Sure nurse will come, people whom I have to pay will come to help, but a friend.............not a one. I'm not sure a broken heart can be fixed. Sorry for this pitiful rant! It really isn't who I am.
  4. This has been posted in the veterans' thread and the caregivers' thread (in which it was suggested it be shared with the whole group, so here it is.) I used it many, many times today. Dianne, I know you can relate to this sort of exercise, as you have practiced well how to live in the moment. I hope you like this one. Stuck in survival mode: Insights into turning down your stress level December 2nd, 2014 by Julian Ford in Psychology & Psychiatry / Stress is not good or bad; it is a physical reaction from your body and brain that is intended to help keep you safe. Stress is not good or bad; it is a physical reaction from your body and brain that is intended to help keep you safe. A clinical psychologist and professor of psychiatry at the UConn School of Medicine, Julian Ford has spent the past two decades researching stress and trauma. He has edited or authored 10 books, including co-authoring Hijacked by Your Brain: How to Free Yourself When Stress Takes Over (Sourcebooks, 2013). Here, he offers a glimpse into his work as well as one approach we can all use in managing our own stress. When stress takes a hold of our daily lives, most of us know how we should handle it: Eat healthfully. Exercise. Pace ourselves. Tend to our relationships. But most of the time, we feel too stressed to maintain the discipline necessary to take these seemingly simple steps. We've come to believe that we are just too stressed to use our stress-management skills. Stress is ubiquitous in modern life, and stress-related medical and psychiatric illness is increasingly recognized as a worldwide epidemic. Although scientists are working to determine how stress affects individuals, families, communities, and entire societies, and to develop techniques for stress management, there still is no cure for common stress. Losing Control My own research over the past 20 years has focused on those suffering from extreme stress syndromes caused by exposure to trauma – such as life-threatening violence, abuse, or disasters – and those who have developed post-traumatic stress disorder (PTSD). PTSD is an acute anxiety disorder in which the sufferer often revisits, or relives, a traumatic event through flashbacks and nightmares. Unfortunately, it is far from rare: Comparable in prevalence to depression, PTSD affects as many as one in every 10 adults in Western societies, and one in every 15 children and adolescents. Developing effective therapeutic interventions to enable traumatized people to recover from – or to prevent – PTSD is one of the most pressing agendas for scientists and health practitioners today. In my book "Hijacked by Your Brain," I explain that there is an alarm center deep in our brains. When we are stressed, that alarm can essentially take control of areas in the brain that manage our memories and enable us to think clearly. For someone victimized by PTSD, that alarm is on high alert. Until it gets reset, the brain is stuck in survival mode, often causing the brain's memory and thinking centers to "crash" like a computer's hard drive, and resulting in persistent feelings of stress that seem unstoppable. Instead of exploring the world so that we can grow, develop, and engage fully in our lives – using what I've called the "learning brain" – the brain of a PTSD victim shifts to hypervigilance and a fight-flight state – a "survival brain." Resetting Your Alarm There is no direct biological intervention that reliably resets a hypervigilant brain. Medications designed for depression and anxiety help with some PTSD symptoms in some cases – but not consistently – and they do not fully or permanently restore the survival brain's capacity to make and to retrieve ordinary memories and to think clearly. However, psychological therapies have been shown to reset brain activity in related disorders, such as depression and obsessive-compulsive disorder. Studies are underway in my lab and my colleagues' labs to test whether victims of PTSD could similarly benefit. The most consistently effective psychological therapies for PTSD are designed to change how people remember extremely stressful or traumatic experiences – but not to enable them to reset their brains' alarm systems. To address this gap, my research has focused in part on developing practical skill sets for resetting the brain's alarm when it has become stuck in survival mode. Changing how one feels and thinks when recalling traumatic experiences may indirectly reset the brain's survival alarm, but there might be a more direct path if we can help people to re-engage the brain's memory and thinking centers on a 24×7 basis, rather than only when recalling stressful memories. The educational and therapeutic program I have developed, "Trauma Affect Regulation: Guide for Education and Therapy" (TARGET), shows individuals how experiencing extreme, chronic, or traumatic stressors can lead the brain's alarm to react self-protectively and become stuck in survival mode. They also learn how to use their brain's memory and thinking centers throughout the day (and at night) to reset their alarm back into learning mode. TARGET then teaches several common-sense, practical skill sets to engage the brain's memory and thinking centers and reset the alarm – strategies that anyone can use in moments of high stress. One of these approaches is called "SOS," which stands for Slow down, Orient, and Self-check. Feeling stressed? Try the "SOS" approach right now:Slow down Re-enter the present moment. Observe what's happening in your mind and body. Perhaps count to 10, close your eyes, or take three deep breaths. Orient to your core values Focus your mind entirely on one thought. That thought – an image, an emotion, a goal – is whatever at this moment is most important to you in your life. Focusing on just one thought turns down your brain's alarm. Self-check Take a moment to assess the level of stress you're feeling as well as your level of personal control, or your ability to think clearly, on scales of 1 to 10. If slowing down and orienting don't turn down your stress, doing a self-check can help activate your learning brain, leading you to begin feeling better and thinking more clearly.Stress is not good or bad; it is a physical reaction from your body and brain that is intended to help keep you safe. Instead of avoiding or trying to "get over" your stress reactions, SOS may be a way to help you regain the one essential skill that chronic stress takes away: the ability to stop and to think clearly so that you can make the right choices. Thinking clearly when you are under stress is a challenge we all face as humans. We've all got an alarm in our brains, and we all experience stress reactions that can threaten our health, happiness, and success. Fortunately, we all also have potentially highly effective memory and thinking centers in our brain, and we can learn how to harness those capacities. Use your stress reactions as a reminder to pay attention to what really matters in your life. Reorienting yourself to the emotion you want to feel right now is the key to turning down your alarm and effectively managing stress. Provided by University of Connecticut "Stuck in survival mode: Insights into turning down your stress level." December 2nd, 2014. http://medicalxpress...hts-stress.html
  5. OK me again five doses into trial of Carbidopa Levodopa to determine if I am officially a PWP or somthing else: last few days in my personal observation of my symptoms I have noticed that yes I have on days and off days/times which I know is normal for PWP... I also have seen I times where my tremor may be worse but my joints aren't as rigid or painful, or My joints will be killing me, but the tremor is not as apparent, and then of course I have times where both seem unbearable (for lack of a better word). Is alternating which symptom is more intense something other PWP have experienced? Or perhaps is this a sign that my symptoms are not related to PD? This is such a diverse illness that neither answer would surprise me. I apologize for all the questions I find information helps me cope with things, and perhaps I am still searching for another opening to feed my denial. Also forgot to mention, seems like alcohol calms my tremor during use but aggravates rigidity especially next day, and exercise/ activity makes my tremor worse but seems to help rigidity... Thanks Richard
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