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Found 11 results

  1. Well it's official. I have young onset Parkinson's disease. The doctor and I suspected as much for awhile so I'm a little surprised that with the news I still feel sad and a little overwhelmed. I'm happy to have an answer and sad that I have an answer at the same time. I'm going to be sent to a movement disorder specialist to sign off on the diagnosis and treatment. We are going to end the Sinemet trial and start an agonist like Requip soon.
  2. 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?
  3. My Doctor suspects Parkinson's and wants me to take Carbidopa Levadopa to make final determination:? How will drug effect me if this is not Parkinson's disease? What will it do if I have PD? How long/ how many doses will it take before I should notice a difference? So far at 1/day for past two days, increasing to 2/day next week, and then 3/day until follow up visit. Feel dizzy and tired for an hour after taking and then feel calm and more stable for a few hours, and then return to base-line so far. Additional Details I did ask my doctor pretty much the same thing, and was told if it is PD the medicine will help me improve, if it is not it won't. Also said that if I get worse to stop taking and call immediately. Looking for someone with first hand experience, preferably with early onset PD as I am in my 30's and finding it hard to believe I have an incurable disease that will slowly make life more difficult. My tremor is a resting tremor in my right fore finger and right big toe, and am less mobile (rigid) on my right hand side (face, elbow, knee, ankle). Brian MRI came back normal (no stroke, or tumor).
  4. I got my DaT Scan results (left side, Putamen region, smaller than right: Parkinson syndrome). I have seen the neuro once and had the MRI already. My next appointment is in two weeks and I want to be prepared. I have had symptoms for about five years but dismissed them, though I knew the resting tremor was a sign of PD. The neuro offered me Azilect on my last visit but I am hesitant due to the demand that I change my anti-depressant regime (20 mg Celexa and 40 mg Paxil). Another doctor I consulted said not to do Azilect if you have a history of depression. The neuro, however, said I would have to drop the Paxil. My psychiatrist says I would not have to and agrees this might not be the right time to mess with things. My symptoms are tolerable, but I don't feel up to messing with the psychopharmacology.... Will Sinemet help with the anxiety/depression? The psychiatrist says Welbutrin is the anti depressant of choice for PD but when I tried it before it made me anxious. What might happen next? What's your experience with anti-depressants? How do you tell your kids?
  5. I am new here. And looking to find out if anyone else has friends/family that have been diagnosed prior to motor symptoms. My dad can't smell anything - and hasn't been able to for the last two years. He is losing weight, has REM disorder (which supplies our family with hilarious stories of him dreaming he is wrestling with his brothers only to be found on the floor wrestling the dog or waking up my mom in a panic telling her the floor is lava). His facial expression has changed, he blinks less often - which makes it look like he is staring while his face is super lax - kind of scary. He has bouts of crippling anxiety - so much so that he has begun to avoid going out though on the side he is a drummer in a band and loves to socialize. He watches It's a Wonderful Life every year, but the last two years he has cried through the whole thing. But he's not 'depressed' in the technical sense - it is more anxiety and the wrong emotional or too much or too little emotional output. His interest in food has waned - he used to finish all the food on the table - he would have all the serving dishes in front of him by the end of dinner - now he finishes what is on his plate most of the time. He can't keep weight on. He says he feels like he can't swallow, but he's been to the doctor who sent him to a neurologist who only diagnosed the REM disorder, but ignored the other issues. He's definitely getting worse and it is affecting his relationship with my mom and his ability to handle the world. Has anyone here had a family or friend diagnosed prior to tremors or other motor symptoms of this disease? Does anyone have advice for talking with a neurologist to get them to 'rule out' Parkinson's? We would love to see him get this anxiety under control, but conventional psychotherapy and medication do not work. Thank you all and I wish that you have a wonderful week.
  6. I need some advice. I was diagnosed a couple months ago, and have been having good luck with meds. More energy, less visable symptoms, etc. However, on weekends and evenings, my symptoms still do crop up - in particular, the fatigue, soft voice, and sometimes tremors, and I have to take myself out of the action to recover. I have three kids - boys 16 and 14, and a girl - 11. Of course they have witnessed the last couple of years of me battling the unknown, knowing that I've been going to appointments to "figure out whatever it is that Dad has". As you've figured out by the title of the topic, I have not shared my diagnosis with them yet. Partially because I didn't want it to be a distraction as they finished out the school year. Partially, because I'm not sure how to share it with them in a way that they understand that it's a big deal, but not a big deal if you know what I mean. I want them to know I'm not afraid of it, and will be living my life much the way I have always lived it. But I'm also nervous about them sharing it with a friend and hearing about their friend's relative who's had a really rough life with Parkinsons and how awful it is ... ANY suggestions on what has helped any of you would be VERY welcome. Wait, don't wait. Tell them together? Talk to each individually? Different message for the youngest? I'm thinking "don't wait, tell them together (with Mom) and no" respectively, but I will take any insight you have. Did any of you get reactions you didn't expect? How have your children handled things over time? I am determined to let them know that I expect them to live their lives as kids and that this will not take away from that. I've rambled enough. Thanks in advance, Bob
  7. Hi All, I have some promising news to share on research progress in finding more scientifically valid diagnosis for PD AND a way to measure progress. Pretty huge since 40 odd years of research has yielded little else other than a scratch and sniff test or a costly DATscan. I am just pasting the blurb I wrote up to send around FB etc. Note: I posted this is Open Forum to make sure it gets to all the right people. It only takes three minutes of your time to advance forty years of research in finding a valid scientific measure of diagnosing Parkinson Disease. Right now, definitive diagnosis is only made upon autopsy and disease advancement is measured with a paper and pencil test. Seriously. A mathematician has found that measuring voice recordings proves near 90% accurate in diagnosing the disease. His research team would like to have 10,000 voice samples of both those who have the disease and those who do not for a control group. This is better than donating money as it can really help a lot people here and now. Thanks! http://www.parkinson...e.org/index.php Start talking! Thanks, Laura Like This Quote MultiQuote Edit
  8. Hi All, I have some promising news to share on research progress in finding more scientifically valid diagnosis for PD AND a way to measure progress. Pretty huge since 40 odd years of research has yielded little else other than a scratch and sniff test or a costly DATscan. I am just pasting the blurb I wrote up to send around FB etc. It only takes three minutes of your time to advance forty years of research in finding a valid scientific measure of diagnosing Parkinson Disease. Right now, definitive diagnosis is only made upon autopsy and disease advancement is measured with a paper and pencil test. Seriously. A mathematician has found that measuring voice recordings proves near 90% accurate in diagnosing the disease. His research team would like to have 10,000 voice samples of both those who have the disease and those who do not for a control group. This is better than donating money as it can really help a lot people here and now. Thanks! http://www.parkinsonsvoice.org/index.php Start talking! Thanks, Laura
  9. Hello! New user here -be patient... I'm a 41 year old high school science teacher, currently officially undiagnosed but finally getting some relief after 5 years of toe-curling, foot shuffling, fist clenching, severe tremor, stiffness, etc. etc. My students have been wonderful, pretending not to notice the shaking, the geriatric handwriting, choking on a simple sip of water. Finally got a neurologist who didn't accuse me of recreational drug use (I think the random drug tests at work should have proved that I was clean...ugh...), and am now on Sinemet and Mirapex. While it is true I'm not 100%, I feel better than I have in 5 years. Yes, I know about the warnings about mirapex, I'll be watching for side effects. Here is my question for the group- is there an advantage to having an official diagnosis, or am I at an advantage not having a diagnosis yet? My concerns are for job security (my family doctor is a school board member), loss of health benefits, etc. You all seem like a wonderful support group for each other...I've been reading your forum for quite some time. How does one locate a local YOPD support group ( if it exists)? Glad to meet you all...virtually...