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Found 47 results

  1. Music and Parkinson's Disease

    I have had DBS for 4+ years, and in the last 16-18 months have picked up my musical instrumetns (mostly keyboards and guitar) with the goal of restoring lost coordination of fingering skills. This, plus singing with a group of Parkinson's People, has enabled me to reduce symptoms and improve cognitive skills and mood. I find that the combination of DBS programming, diet, exercise (including Dance for Parkinson's), reduction of pain through surgery, and creative musical expression have all contributed to the whole picture, which is that I feel better than I did this time last year. I have recently read or heard of information that dance as an exercise for Parkinson's provides longer lasting symptom relief than other forms of exercise. Since performing and creating music should theoretically stimulate and challenge the brain more than simply moving to music, one might hypothesize that the beneficial effects of music might be even greater than those of dance or exercise. Questions are: Any other folks with PD using music to lift depression, restore energy, etc.? What level of skill had you originally attained and where are you now? More importantly, what effects have the practice of music had on your Quality of Life and disease symptoms? What other treatments are you taking, (not limited to prescription medications or DBS programming?) More of a medical research question: What is the current state of research on the use of music, either as a preventive, ameliorative, or restorative trreatment for the physical symptoms or emotional and psychological consequences of Parkinson's Disease (pre and post diagnosis) and other conditions that are related to dopamine deficiient and other neuro-transmitter deficient brains? (depression, bipolar, essential tremor, etc.) It may be important that my DBS implants (bilateral) were done shortly after medical specialists were able to observe sufficient criteria to be able to make the diagnosis of Parkinson's, or that I had several of the "warning signs" from about 16 - 17 years of age, and prior to the PD diagnosis had been treated for depression, RLS, RBD sleep disorder, essential tremor, and other conditions. Anyone know of any research being conducted in this area? Anyone care to add their experiences or comment? Does any of this resonate or "strike a chord" with you? Thanks!
  2. 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!
  3. My 82 year old mother had what we believed to be essential Tremors usually only visible when trying to feed herself shaking hands only when she tried to eat. Two and half years ago a neurologist began Treating her for Parkinson's. She never displayed any Parkinson type issues but was put on Carbidopa-levodopa and azilect. She was a very normal person drove to the store and had full mobility never any signs of what you would call parkinson symptoms. After about the first year we noticed her doing some odd things like tapping on the window repeatedly to see if the cats were out...when she really knew the cats were in. Seemed innocent and harmless enough but came on at bedtime. Then she began clicking the light switches on and off multiple times for no reason. Got to a point I had to tape over the light switches because she couldn't stop herself a year and half later we noticed at night her tongue start to protrude, her walk became hunched over and she was shuffling along this again only at night. Her memory was fine,She knows phone numbers dates names pretty much anything you would ask her she would know. Fast forward 2 years now at 82 she is pretty much a vegetable. She doesn't speak, she can walk very slowly with help but has aged from a normal person fully functional two and half years ago to a 100 year old. She now sits in a chair up all night touching the freckles on her legs literally for 4 or to 6 hours just back and forth in her own world. We just can't find any diagnoses for what has changed her so dramatically so quickly. We thought maybe the Parkinson's med used on her for Essential tremors may have played a role but there is no mention anywhere of this sort of thing happening to someone. So just reaching out to see if you have ever seen a case like this? any help would be appreciated...PS even her regular doctors are shocked at her state and can't understand it. Thanks Steve
  4. So just wanted to find out if there is medication that helps with dyskinesia? How fast does PD progress. Ive had it for 2 years.
  5. My mother has been diagnosed with Parkinson's for about 10 years. About five months ago, she started having these episodes she calls "fever face" where her face and neck flush blood red, she gets very hot, and her blood pressure spikes very high. These episodes can last for hours and often is accompanied by a headache, nausea, and frequent urination. She turns a fan on her, puts an ice pack on her face, bathes her face with a wet washcloth, and drinks ice water. We have been to the ER due to the blood pressure spikes and they put her on blood pressure medication which is not helping these episodes, even when she takes extra. She also takes anti-anxiety medication. She has been hospitalized and that did not work out as they took her Parkinson's medications away. So - now she just endures this but is not functional during these episodes. She just lies on the bed waiting for it to pass. None of her doctors (to date) have been able to tell us why this is happening, what to do about it, or if it could lead to a stroke. I appreciate any input that will help us understand what is going on here.
  6. Hello! I am new to this forum. My husband was diagnosed with PD four years ago at the age of 59. At that time it was deemed early onset. He had excessive saliva, was very slow, freezing when walking, and much more. Meds did help but they have been changed a few times. About a year in he had a few hallucinations. Over the past six months he has gone downhill. Things are moving faster than I expected. His gait and balance is worse. He had one fall at work before he took medical leave. He hasn't been diagnosed but has R.E.M. Sleep Disorder, but doc thinks he has it. He has talked and screamed in his sleep for years but recently fell out of bed acting out a dream. That is a little background. What is puzzling me the most is his breathing. About 6 months ago he began being short of breath. His neuro said to see if it continued and it did. Last month a chest X-ray indicated COPD, but today he had a PFT and the nurse said it was fine and even asked why he was there. He doesn't struggle all the time but struggles at rest as well as with activity. He has a stress test and echo upcoming. Over the past weeks he has developed a 'barrel' chest. Could his Parkinson's be responsible for his breathing difficulties? He is on Sinemet, but it doesn't seem to matter if he just took his meds or not. Thanks for any help you can give.
  7. 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
  8. Causes of Parkinson's

    I know that scientist and doctors alike have not definitively found out what causes Parkinson’s. They believe that it is a genetic predisposition and/or environmental issues that cause it. I was just wondering what everyone here thinks might have caused theirs to start? I am a firm believer that I am genetically predisposed to PD and I think the environment I grew up in has something to do with it. As a child I grew up out in the country. I was raised on a 100 acre farm and lived next to fields all my youth. I can remember helping my grandfather get the seeds and fertilizer ready for planting corn and wheat. I do not remember wearing gloves or using a mask as we worked with the fertilizer. I can also remember the fields next to our house getting sprayed each year. Living in the sticks we did not have public water. We use a well. I am sure all of this played into my development of PD. The interesting thing is, my sister has MS and my cousin who lived around the corner also has MS. I am nervous that some of my younger cousins who also grew up near me may develop PD as well. What does everyone here think may have led you down this path? Blessings
  9. Cannabis is legal in my state . If there any benefits for using it with PD? I see how it could change your mood.
  10. I just got a DAT scan. I have a good idea of results. I just wanted to see what you thought. https://goo.gl/photos/wp3MfeKFWobqyfn78
  11. Questions on your experiences

    Hi everyone, My name is Alex and I'm an industrial design student at University of Cincinnati. Currently I'm trying to design a walker for people suffering from Parkinson's, after seeing how difficult movement is for a friend of mine who has the disease. I know it is a sensitive topic and I don't want to tread on anyone's toes, but your input is invaluable as a patient or caretaker who deals with Parkinson's everyday. The last thing I want is to make something useless out of naivety or lack of comprehensive forethought. I know everyone has different a different experience with the disease and I'd like to account for the different ways it may affect you. I have a number of questions, and I hope have a conversation about them with you rather than offer a survey for you to complete. I'll try not to write a wall of text while explaining every one of my questions, but I think a bit of context might help. If you're interested in more background I'll gladly provide additional information. One area I'm looking at is staircases. My friend (whom I'll call George out of respect for his privacy) uses multiple walkers, because he can't take them up and down stairs. One idea I have is to make a lightweight walker that can help him move up and down stairs with greater ease. However, I also realize how devastating a fall can be if it were to happen. What are your experiences on staircases? Do you require a handrail? If so, how do you use it? (One or both hands, for balance, weight support, etc?) Would you be interested in a walker that can go on stairs at all, or would such an idea be too risky to use in a real world situation? Another area I've looked at is freezing. There are some mobility devices out there that have laser guides or small sticks that you can step over, which reportedly help rewire the thought process behind taking a step so that freezing can be counteracted. Similarly, I've read that walking on patterned tiles (checkerboard or white and black stripes for example) can help make walking smoother. Do you have any thoughts on this, in terms of your own experiences with freezing, personal remedies, and opinions on such technologies/practices? My last focus is on the adjustability of walkers. If you have a folding walker, how often do you fold it up and for what purpose? Most walkers can be adjusted for height, but do you ever wish it could be more easily changed? For example, for people who have difficulty getting out of a chair, do you ever wish your walker was a different height to help with standing up? I sincerely hope not to insult anyone with these questions. Any answers at all would be greatly appreciated, and of course only answer what you are comfortable talking about. If you have any advice for me in terms of approaching the topic in the future, please do let me know. Thank you for all your help! Regards, Alex
  12. 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. Click here to complete the survey. Thank you for helping in the process of allowing those diagnosed with Parkinson's to become more independent.
  13. Help some danish students!

    Hello We are a group of students from Aalborg University (Medialogy), Denmark, who are working on a project about people with hand-related motor impairments, such as Parkinson’s disease, and their usage of smart devices with the intention of improving their accessibility to these technologies. We hope some of you will take a few minutes to complete our survey. Thank you for your time. https://docs.google.com/forms/d/1cxb42zGUqr6LmHeRO1vdjX6jrbS6K-On8Cru4Jl-0Y0/viewform?c=0&w=1
  14. 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
  15. DBS: One Man's Journey

    Hello, My uncle is suffering from Parkinson's disease and I am trying my best to share his story ( Bringing Buddy back: Teamwork, technology restore a Parkinson’s patient ) that was recently published in The Record, a local newspaper and can be found here along with a video: http://www.northjersey.com/news/bringing-buddy-back-teamwork-technology-restore-a-parkinson-s-patient-video-1.1380917 And here is a follow up story that was published this past weekend: http://www.northjersey.com/news/health-news/friends-raise-cash-for-parkinson-patient-1.1389405 Thank you and God Bless you all!
  16. Hi, I hope I'm not intruding here, as I, myself, do not have Parkinson's - my dad (76) does. He started showing symptoms in the form of hand tremors over a decade ago. I don't know exactly when he was diagnosed (he doesn't like to worry family). From the time I was a kid, I remember my dad coming home from work, getting washed up, having dinner & within the hour be stretched out on the sofa or recliner, fast asleep. I always chalked it up to working hard (he was a carpenter/contractor) and often outside. He worked steadily until he was 67 before retiring. I have Narcolepsy, while my diagnosis was not confirmed (via MSLT - Multiple Sleep Latency Test) until this past August (2012) I'd been from doctor to doctor for a couple years in effort to find an answer to my excessive daytime sleepiness. Looking back, I believe I was symptomatic back in my teens, but they never disrupted my daily life until around 2003. I spend a lot of time with my dad and have noticed he and I share a number of symptoms - namely diminished automatic movements, like smiling, changes in speech - as my meds wear off I tend to slur & hesitate/word search, sleep disturbances - either chronic fatigue, occasional insomnia, sleepwalking, talking in sleep, short term memory loss. Narcolepsy is so often misdiagnosed and it's quite difficult for even some doctors to understand completely because there's so little research being done. One thing I found is that along with sharing some symptoms with my dad, what I've read shows that people with Parkinson's as well as Narcolepsy have significantly lowered hypocretin levels. There's a support group (one of many for people with Narcolepsy) on Facebook - i posted a query as to how many members had immediate family with Parkinson's and was floored to see within minutes a half dozen members reply that a parent or grandparent was diagnosed. My question for those in this forum is do any of you with Parkinson's have immediate family members who have Narcolepsy - or a sleep disorder that has not yet been diagnosed? Often Narcolepsy symptoms are mistaken for depression & patients (don't have sleep studies) are given antidepressants - which mask many Narcolepsy symptoms, thus one could have Narcolepsy, but believe what they have is depression. Thank you for your time & consideration
  17. What would you like to know?

    Dear Community, First I would like to thank you in advance for reading this. As a future health care professional and a follower of the belief of the art of caring I would love to receive opinions about some of the questions that cross your mind when being diagnosed with Parkinson's. What would you like to ask or what kind of information would you like to receive from your family physician that would go above and beyond your expectations while being seen at the office? What else would you expect from your physician? The reason I am asking is because I have a presentation to give about patient education when diagnosed with parkinson's. I could just do my research about the diagnosis and include such things as I would suggest to my patient to find a support group but I want to go further than that and educate my classmates about what patients who are actually diagnosed with Parkinson's want from their doctor. So I need and would appreciate your input. I hope that it is ok to ask this community for help. I think if healthcare providers just stop and listen to what their patients really need and want, it would be a positive outcome for both the patient and the caregiver. Thank you for your time. Rose K. D.O. 2018 Candidate
  18. Is Chia Seeds a safe alternative to meet the daily fiber intake to help with constipation that comes with Parkinson’s? It has lot more fiber compared to the fiber supplements in the market and lot cheaper. Wonder if it’s safe to take every day to meet daily fiber requirement. Also wanted to congratulate on your award for Champion of Change for Parkinson. Your contribution is invaluable for Parkinson patients and caregivers around the world. This forum has been a wealth of knowledge.
  19. Does DBS actually helps to reduce dyskinesia or dyskinesia is reduced by medication reduction after DBS for Parkinsons?
  20. Mirapex/Re-quip/Neupro Question

    Anyone out there know whether the types of products above are helpful or would exacerbate Dystonia symptoms? Mike RXVANMAN
  21. Hello. I am new to this board and to seeking information about Parkinsons disease. My question is regarding my husband but there are a couple of side questions. My husband and I have been together over 30 years. When we first started going out I noticed that some of the fingers on his hands seemed stiff to the point that they were arched the opposite way. His hands did not shake at this point, but a finger or two would twitch. As time went gone by, I noticed that now his hands started to shake. The last year or so it has gotten pretty bad. If he is holding a newspaper it shakes a lot. If he is holding a fork or food in his hand his hands shake a lot. Last night he was pouring juice from a bottle into a glass and the bottle was rattling on the glass and it was a miracle that the juice made it in. Over the years I have mentioned to him that he might want to go to a doctor and ask about his hands. He brushes it off and only goes to a doctor if he needs medication, like for a sinus infection or something. My sisters have asked me about it and I just told them that his hands have always shaken, but I know in my heart it is getting worse. He can function - like he can hit a nail with a hammer, he has a job with computers and as far as I know (I'm not with him at work) he hasn't had any problems doing his job. His sister has Parkinsons and has had it for about 15 years. She has had surgery to have an implant put on her brain to stimpulate impulses. In her case, she had a lot of shaking all over her body, really no control. Difficulty walking, talking, much worse than my husband. I would also like to know if Parkinsons is hereditary? We have 5 children and I would like to let them know to watch for signs of the disease (3 are grown) and keep an eye on the two that remain home. Should I urge my husband to go to a doctor and is there any point if there is nothing that can be done, or is there? Thank you so much.
  22. http://www.bbc.co.uk/news/health-31585299
  23. 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???
  24. 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
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