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Found 16 results

  1. I was recently diagnosed with PD by a MDS. As of now, the most bothersome symptom I experience is a sensation that my left leg is slipping out from under me when I am standing or straddling. My leg is not moving - just feels as if it is. Kind of like the floor is slick under my left leg, when in fact it isn't. Just wondering if anyone else has symptoms similar to this, or could this this something other than PD?
  2. Hello all, A neighbor to my parents called about her son who had DBS on Monday. He is not able to walk and is still in the hospital. His voice is very soft. What has been everyone's experience immediately after the surgery? My DW went home the next day, but as the doctors said, she had the optimum outcome. He is around 60 if I recall correctly.
  3. My husband has PD (for about 2 years) and his symptoms are mild (basically a left hand tremor) and are on his left side. He is NOT on levadopa but is taking 1 mg of Azilect. About a month ago he noticed a slight numbness on the bottom of his right foot near the ball of the foot. Since it is on the right side where he has no other PD symptoms we are curious if this could be a new PD symptom or is it likely some different problem. Your thoughts? Thanks!
  4. Dear Members of the Forum, I am living with and caring for my 74-year-old mother, who has PD for the last 15 years. We are in a process of adjusting her medications (again) and although I was introduced to the concept of on-off preiods I (and our neurologist) have hard time identifying whether my mom has an off-period or she feels bad because there might be too much of medication or it is not absorbed as it should. I made a movie of when my mom was feeling bad, which happened at the same time every day (45 minutes after her third dose of Sinemet) and showed it to our doctor. He said that it looks like too much medication. We tried reducing the dose but it didn't improve anything. Now I start thinking that maybe it's the opposite? That is, that this is her "off period". I would greatly appreciate if you could share your experience of what it means for you to be in an "off period". Do you have dyskinesia? Accute pains? Spasms? (where?) Agitation? Short breath? Any specific information would help me and my mom to at least identify her problem. Many many thanks in advance.
  5. Hello my friends...I have a question for the forum with me keeping in mind we are all different... How much time in between was the progression to the next symptom from the symptom that you knew you had PD? For instance...my husband noticed my bent elbow on my right arm in Feb 2014.... Lack of arm swing March 2014.....My tremor then followed in July 2014....I did have ridgity in my leg but only lasted 4 months then disappeared and never returned but a tremor took over....after a year of my first symptom I have no other then a tremor on my right limbs and a lack of arm swing for the first 20 minutes of a walk... When does the gait issues come in and the masked face or the swallowing problems...all the other symptoms? Have most experienced more then two symptoms in the first year or second year? Really how slow does it go??? Thanks for any input....still discovering... Laura
  6. What sort of non-motor symptoms does Sinemet help with? I don't feel as cranky since I'm not hurting as much. Beyond that though, what have been your experiences with non-motor symptoms and Sinemet?
  7. Hi. I am reluctant to post, am not sure why I am posting, other than need a little re-assurance for settling some anxiety and nervousness about my upcoming MDS appointment. I really don't want to open myself up to criticism, but I do need a little advise. I know this is a support forum, but sometimes things I've read get a little too personal and there is some harshness. I've been waiting a long time to see a specialist, over a year, and the time is finally arriving, and I'm not sure what to expect, exactly. First, I didn't have insurance, so couldn't afford to see a specialist, then when I finally got insurance, and found a specialist, the waiting list for my network was 8 months. That is why it has taken so long. So I've had some time to let my nervousness and anxiety of the unknown try not to get too much of me, (so I say). I've started having strange symptoms over two years ago. My symptoms have not gone away, once I noticed them, and they are progressively, but slowly, getting worse. I don't have a noticeable resting tremor, so the obvious sign is not there for my neurologist to consider PD. However, there are other symptoms. Regardless…. I am relieved to finally have a Dr. to speak with who will have a better understanding of these diseases and symptoms, and hopefully will be able to give me some answers to what these changes in my body could possibly be, other than psychosomatic. I've been feeling a bit scared, and frustrated, because I don't seem to function as normally, as I did before, and it is rather frustrating, and tiring. I feel alone in this, because I have been keeping it to myself, since I have not been taken seriously. It seemed that the more information I tried to describe what I was feeling, the more my neurologist looked at me like I was a hypochondriac. I don't share my frustrations with other people either, because they are so subtle, and my problem, not affecting them. My primary Dr. is pursuing this further now, since my symptoms and complaints have not gone away, and I'm feeling worse, after all this time. My nervousness with seeing the MDS is that I have waited so long to see one, and I want to make the appointment effective in helping me get some answers; I don't want to go in there so nervous that I can't even communicate with her, because I may forget, or be afraid to tell her something or because I don't want to be tagged as a hypochondriac, and sent along my merry way, alone and scared some more, and feeling stupid and doubting my natural abilities to be self-aware, and observant, thinking I'm making stuff up. I'd really like to have someone really listen to my concerns and give me some sort of response, even if they cannot make a diagnosis, at least listen to my concerns and don't ignore them because they don't know the answer. I don't like not knowing why something is not right in me. I want to know, it does make a difference, then I can know what I am dealing with and move on, and learn how to deal with it. I hate hanging in-limbo. I can accept things in life, but I need to know what it is so I can understand it, even if I don't like it. Many of you have felt this, haven't you? So do I go in there with a list of questions and symptoms, so I don't forget, or do I let her ask me everything and observe? Is there anything I need to take, or do? I get nervous more about having a good rapport with the Dr., if I start feeling that I can't trust the Dr. I know I will just clam up and get upset… the last thing I need to do is start crying, I do that when I get nervous. Then I'll be upset and a little confused. I've stuffed this all in me for so long, I'm afraid I'll start crying just because I can actually talk openly about it. I can't wait for this appointment to get here and be over with. How do I do this best? I'm sure the Dr. will know what to do, since they do this constantly, see people come in with a lot of anxiety over all these concerns. hmmm… gosh, do I sound anxious??!! lol.. yep. I guess I'm just asking about how to handle this first appt. and I know they do a series of mini tests, but what should I take in to share with her, or do I just go and be there in that moment, and let her tell me what to do, and not be prepared in any way? I haven't received any papers yet, so I've not filled out any patient history or anything like that. But my Dr. has sent all my test results, notes, MRI results, etc. to her. Thanks for any input. Mary
  8. Hi, I'm new to the forum! My name is Joe and I'm an engineering student at Oxford University. This year I am working with three of my colleagues to design a semi-autonomous electric wheelchair for use by people diagnosed with multiple sclerosis, cerebral palsy or Parkinson's disease. In the project we will be taking an existing electric wheelchair and looking to build onto it a system which will aid the user with going about their daily lives. To give you an idea, we are currently looking at how the wheelchair can be controlled during an onset of tremors, or other debilitating symptoms, but the scope for what we can do is quite broad. Although within the group we have experience of working with people with disabilities, none of us have first hand knowledge of the diseases, the symptoms, or the effects they have on people's lives. The reason I have come to this forum is to ask for your help and valuable knowledge to develop our project. We are specifically looking at an age group of between 20 and 50 years of age, and those who use or have used electric wheelchairs. Although we would welcome input from everybody. I ask you to get in touch and tell us about your experiences of using the wheelchairs: positives, negatives, ways you feel they could be improved. We would also like to know about how these diseases affect everyday life, to build a picture of the needs and requirements of the user. Obviously these experiences vary a lot between each person, but having done some research we will look to narrow this down to some key issues and perhaps focus on case studies of a few people. I must stress this is a research project, and there is no commercial aspect to it. For this year the project is purely theoretical, however should we come up with something good we may well continue the development next year as this is a subject we all feel passionate about. Feel free to comment on the forum, or you can contact me via email if you prefer: joseph.hayden@seh.ox.ac.uk Thank you for your help in advance, your time is much appreciated. Joe
  9. 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.
  10. I guess I will just start from the beginning; when I had my first initial symptoms. approximately 2 1/2 years ago I had a distinct and alarming symptom that for some reason really bothered me... my right hand began to start closing on its own as if someone had their hand around mine forcing it shut. this symptom was accompanied with weakness in my hand and fingers and fallowed by pretty intense but tolerable and uncomfortable pain. I also had noticed my vision getting noticeably worse but just shrugged it off as something that comes with age. I went on for a year and a half or so with these symptoms that were blatantly apparent to me. I would say sometime last summer that's when the symptoms worsened. the pain in my arm began to be unbearable to the point of which I didn't want to do anything but lay on the couch all day. even brushing my arm up against a pillow would bring me to tears. the weakness in my hand began to mentally mess with me and I even began showing symptoms of extreme coldness, numbness and tingling in all limbs to the point of which it almost felt like they were on fire. I also noticed a slight tremor from time to time in my right hand. I thought to myself may I have some sort of nerve damage or neuropathy or poor circulation or something. its as if these symptoms were a ghost, they would go away and then come back, go away and then come back and I began to feel as if people thought I was crazy. last fall approached sooner then I felt necessary and yet again another episode which lasted 3 weeks. a couple months later as winter was ending, it was mid February, right around my birthday February 17th. there it came again, rearing its ugly head. This time it was the worst yet, and with even more alarming symptoms and an even longer stride. this episode lasted a total of 5 weeks!!! during this what I felt never ending torture I endured the typical severe pain in my right arm, numbness, weakness and tingling sensations but this time it was times 10! the tremor had become more dominate as well and I even started dropping things. I found it hard to even pick up a small medical record(which is half as thick as a large phonebook) with my right hand without dropping it. I just couldn't do it, I had to use two hands. I found myself mid conversation and could physically feel my speech slowing down as if someone had pushed the slo mo button. I couldn't do anything to stop it, to speed myself up. when I would come to I would find it hard recalling what it was I was saying or why we were even conversing and have a puzzled look on my face. at times I would be at my computer and out of nowhere I'd realize I had been staring at the screen for over a half hour and had not done any work whatsoever and was still on the same page of the same medical record for that length of time and yet be confused and not realize what had happened in that time. it was as if I were in la la land or something. not in this world. at times I would leave my desk to do whatever task I needed to do and within a few seconds I would go sit back down cuz I couldn't remember why I was getting up, where I was going and what it was I was about to do and why. one day as I was walking home from the bus which is a half mile I all of the sudden got off put... as if I were on a boat in the middle of the sea during a wild storm and I couldn't tell which way was up. I am assuming this is what vertigo feels like??? with all these symptoms I went into a deep depression. at that time I didn't have any insurance (luckily I do now) so I was so lost on what to do, what could be causing it and how to make it stop. I had multiple nervous breakdowns where I would just cry and cry. I cant even begin to explain how many nights I would go home from work and lay in bed while my bf rubbed my arm to try to help ease the pain. its been about 3 months now since that horrible attack. since then I have had a couple of episodes of depression that spring out of nowhere, I wake up stiff in the morning and have now had two episodes of where my right leg will just lock up while I am walking. it takes about ten minutes for me to recuperate. my tremor has started to become more noticeable, well to me at least. I have trouble sifting through the pages of medical records at work and have even had to ask my boss to put things in envelopes for me. the shaking sometimes is at its worst when I am doing small tasks such as this with little movement. I sometimes cant even open my eye shadow and have to have assistance from my boyfriend. I had my first doctors appointment on may 20th.... he ran a slew of blood tests, did an xray and ordered a ct scan of my head. all of which came back completely normal. the thing he was concerned about was my heart rate being so high at 114bpm, and my blood pressure being low 98/68 which are not normal numbers for that of a 27 year old female in general good health. but yet tests showed no reason as to why. once I received the results of my ct scan, I immediately called my doctor. I told him I need referred to the next specialist in order to take the next step necessary to find an answer. I KNOW MY BODY AND SOMETHING IS NOT RIGHT! this is where I stand today. I got those results a week ago and unfortunately none of the 8 neurologists covered by my insurance have an appointment till September. so I scheduled an appointment with the doctor that I actually was hoping to see, he is also a movement specialist.....from the research on the symptoms I have done it recommended that I saw a neurologist that specialized in movement disorders. still I cant help by wonder and I cant stop my brain or shut it off. if anyone has some insight or advice on what they think or feel on my matter or what I should do please let me know. any amount of support would help at this point cuz I think everyone thinks I am insane. only my boyfriend and I have seen the extent of the symptoms and how debilitating they can be. September just seems so far away!!!~Lyndsey
  11. How is PD effecting your life today? So far, as of 7am, PD has had very little effect on me. I've taken my Mirapex and I feel pretty good (in stark contrast to yesterday morning when I felt quite sick). However, I've got a big day planned today. I have five large garden beds to till and a big pile of brush to run through the chipper. I'll post later how that goes. How is PD effecting your life today? Is it preventing you from meeting your goals for today? Is it only a minor inconvenience or a major hurdle?
  12. I am having a hard time regulating my medication. I currently am taking 2 ea 25/100 Sinemet 5 times a day, 2 ea Ropinirole .25mg 3 times a day, Soma 350mg 3 times a day, Zoloft 100mg once a day, I have terrible movement isses, almost like a seizure, I have difficulty breathing deeply, my movement is uncontrollable, my arms,legs,and head are jerking. It lasts until my meds kick in. Would a seizure medcation help.
  13. Hi I am active duty Military and have been for 12 years. For about four years now I have been suffering from some medical issues but I have never really liked going to medical for any reason. It wasn't until I lost complete grip in my left hand, loss all sensation in my face, leg, arm all on my left side and that is when I had decided it was enough. I went to see a orthospine doctor and he informed me that my muscle were very tight causing them to constrict onto my nerves making the pain someday unbearable. I was put on Neurontin a nerve deadener and Zanaflex which is a muscle relaxer. This was the first of many doctors I would begin to see over the span of a year and still no relief. I began to have more and more new oncoming symptoms, migraine headaches on the left side of my head, I lost peripheral vision in my left eye, got weaker in my left side of my body, started stumbling more, had trouble sleeping, my daily movement had slowed down, I had started to have tremors so bad that I had to use a spoon to eat at times, again my muscles were stiff, on the left side of my body I could not do a finger to nose to finger test without missing the doctors finger and having intention tremors at the end. I also had other symptoms that my wife and my Primary Care Doctor had noticed. I was beginning to get tired real quick, my handwriting was sloppy and small, my fine motor skills, cognitive skills, and not easy remembering the easiest stuff was noted on a neuropsychology test. The depression got worse, I started having problems swallowing, again the numbness and tingling in my arms and legs, losing my sense of smell, losing my sense of pain on the left side, while walking my left arm just hangs there, constipation, and increased sweating. I finally got an appointment to see a neurologist and much to my surprise he was not a neurodegenerative doctor but a migraine specialist. He sent me for an MRI and it showed a possible Neuroepithiel Cyst in my Left Choroid Fissure Region but I am not convinced that's what it is and also white matter change bilaterally unspecified. He called all my issuse Stress Related. So not being convinced I requested a second opinion because like I said this has been going on for four-five years and I wasn't stressed that much back then or now. So I arrived at my second opinion and the doctor who specializes in Neurodegenerative Diseases which happened to be in the same hallway and next door as the other neurologist said that he was very alarmed on my symptoms and sat back and ask what the other Dr had said. When I told him he smirked and said Yeah that's what I think too. Have a good day. What do i do? Is this worth going to see yet another doctor? Please Help? Thanks William Wall
  14. Hello, I am brand new here. I have been doing a lot in Googling lately. Then found some interesting symptoms that had YOPD. For one I notice both my hands shake, either if I am in a weird position, after coffee, or when I get really upset my arms shake. Sometimes when its cold too and when I don't expect it to be. Then stops once I realize it. I also shake when i take a deep yawn. It doesn't happen all the time, but I have been doing that since I was a young teen. I am 34 now. I have full arm swing from what I can tell, I used to have a stoop posture as a kid. After I went to the military I have always stood up straight when I walk or stand. I haven't noticed any stiffness when moving around. No tremors when I am at home watching TV or sitting with my kids. I use a laptop and i notice if I keep the bottom of my palm on the pad my fingers will shake when I'm about to type. But right now I have my hands up and no shaking while typing. No tremor when I hold my mouse. I noticed it tremor once when I read a message that made me really upset about a year ago. But nothing since. I first notice my first shaky tremor when I got upset about 5 years ago. I remember because I sell items online and a customer left me a bad review which set me off. I am able to do just about everything during everyday life. I haven't noticed a loss of smell or taste. I went over my hand writing from notes I tooke from mtgs and job walks I do. I always had bad hand writting and nothing really stood out to me as writting small. Just sloopy like I have always written. If anyone with any insight can provide me some info that would be great.
  15. 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?
  16. Hi, I'm new here. I'm trying to decide if I need to be seen or not. To be honest, what I've read scares me a bit. I'm a mom of 8, my husband has congenital heart issues, and I'm needed to care for him, the family, and to help make a living. I'm about to turn 49. I have had off and on resting tremors in my right hand for a few years now. Most of the time I don't notice it, but in times of stress, it becomes more noticeable. In the past week, it's been fairly constant when my hand is at rest. Even my husband and oldest daughter has noticed it. My husband chalks it up to stress, but I don't feel my stress level is much different than normal. It lessens when I begin a task, and it doesn't bother me once I relax enough to sleep. If I sit for awhile (either working or resting), getting up is more difficult than it used to be. The action of getting up takes a few moments longer, and my first few steps are painful and slow. It improves the further I walk. The hesitation seems to be centered in my right hip. I also get hesitations in my right hand when typing, using the mouse, or other activities. Other symptoms include waves of localized pain in the ball joint of my foot, my hands, wrists, and sometimes back or neck, but I don't know if they're related. From talking with relatives who have arthritis, it doesn't sound the same. It is usually in one spot at a time. I've had a pressure/pain on my sternum for about 3 years now, but tests have shown nothing. It comes and goes. I also get migraines on occasion... I've gotten them since I was 12. Thank you for any advice you can give me. I want to make sure I ask the right questions if I make an appointment. Toni