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So two days ago when diagnosed - and after a two year period of observing myself having issues (and the occasional doctor visit and a couple of rheumatologists visits to rule out arthritic conditions), I had my answer. So what did I do? Cry? No. Did I celebrate that I had an answer and that I wasn't some crazy stiff and shaky hypochondriac? No. I did what many of you did. I went back to work the very day of my appointment. Kind of interesting that I am a psychotherapist. I did groups and individual sessions with people who are depressed - many of whom live in an affluent area (Johnson County, Kansas). Did my empathy suffer? No. Not a single thought such as "You think you have problems because you are not sure why you are depressed and can't decide between the new Lexus of the Land Rover?" Nope. I still felt compassion and upliftingly directed them to be mindful of their thoughts and feelings and engage in healthy behaviors. I went home, told the wife. My 17 year old daughter was concerned. My 12 year old son (who has mild Asperger's) asked me if I was going to die. I told him that I would be fine, maybe just struggle more with some tasks. I didn't tell my 21 year old - that lives out of the home with his new family and their two new babies. I didn't want him to know yet. My wife said "I just can't picture you being disabled some day". We ate dinner, watched TV and I woke up the next morning and wolfed down an Azilect (and regretted it too because I have gluten intolerance and my choices of food are limited anyway - now I have to worry about all sorts of MAO interactions). After all the "Parkinson's for Dummies" book said that it will not kill you and that there is probably a cure around the corner. Just another day at the office, right folks? That was the day before yesterday. And then yesterday, I decided to leave work on a short walk. I hobbled across a busy intersection and almost slipped climbing a grassy slick embankment. I made it to a coffee shop and reached in my wallet to grab my debit card - which somehow decided to elude my grip and sail to the floor. I picked it up and then reached for the piping hot coffee. Now I have to be extra careful. I managed to juggle it to a table and sat down. Then it hit. Sadness. Was it the new medicine - or was it ... oh, crap "I have Parkinson's - my life will be different." I am technologically gifted, so I therapeutically stayed up late and made my own little Pdude website (despite problems typing) and felt almost a sense of serenity. Thanks for listening.
Hello, I was just diagnosed yesterday by a neurologist and have an upcoming appointment with a movement disorder specialist. My symptoms were/are: stiff legs, stiff neck, poor sleep (difficulty turning over, frequently waking up), leg/feet cramps, shoulder locking, rigidity in my right arm, cog-wheel (ratchet-like) movements of right arm, awkward gait (limping walk with short steps), decrease in facial expressions (including decreased blinking, decreased emotions), vocal changes (not speaking loud enough, sometimes having slurred speech when fatigued), balance issues, swallowing difficulties and increase in acid-reflux (this could be also related to my gluten intolerance but persisted after I cut out gluten), dexterity issues (not calibrated hand/finger movements, dropping things, and difficulty writing/typing), some executive function issues (fumbling for words, stuttering, increased difficulty multitasking) and finally tremor. Like many of you, I lurked on the site a little while before my actual diagnosis. What a wonderful group of people here, I almost feel like saying that I am glad to join you. - Chris aka "Pdude"
Hi everyone! My name's Michelle and I was dx'd with PD in April of this year. I am 44, live in extreme Northern California, am the single mother of one grown (living at home) son, and I teach and show art. Prior to this new dx, I was already on disability for a rare hand disease that caused the bones in my wrist to die as well as a weird disease that causes benign tumors to grow in my hands and feet. After 10 surgeries, I really thought I was due for a break but I happened to mention this stupid little tremor to my neurologist... About three years ago, I noticed a consistent & progressing resting tremor with almost unbearable stiffness in my left wrist. Occasionally, my left foot shakes as well and my left arm had stopped swinging. I move like I'm 80 (been doing that for at least a decade and a half.) I really thought it was some complication from all my previous hand/foot issues but I finally decided to mention it to my longtime neurologist whom I saw for chronic migraines. As luck would have it, it was the day my doctor was retiring. He gave my hand a passing glance and said "Oh, that's essential tremor. No big deal...Katherine Hepburn had that you know." And so ended the conversation for another year when I decided to revist the issue with my new neurologist. She asked me several questions, put me through my paces in the office and really didn't say too much about it except "Hmmm..." and "I want to see you again soon." Upon the next visit, she put me through my paces again...you know...."follow my finger," "walk up & down the hall" and so forth. I failed a lot of it on my left side. This time she said "Doesn't really present like essential tremor at all." She ordered an MRI which came back completely normal. Finally, this April, she said "You know, I'm really sorry but I think this is Parkinson's." I was not really surprised as I had, by now, been doing a lot of my own research and a PD dx explained years' worth of strange symptoms. Still, even though I thought I was prepared, hearing it come out of the doctor's mouth made it real very fast and I have been rocketing through the stages of grief in the last few months. Currently, I'm taking 25/100 of Sinamet 3x a day along with Requip 3x a day. I just started the Sinamet so as I understand it, this is sort of a test of the dx. So far, taking Sinamet is like throwing an off switch on my tremor unless I get very nervous or it is an hour before my next dose. So that is "Yay! It works!" and also "Damn! It works!" I am still hoping, deep down, that I'm being punked and someone is going to jump out of the bushes any moment to say this has all been a big joke. I really thought that I was going to bear this like I have all the other stuff...completely alone. I've raised a child on my own while dealing with constant health issues and initially, I felt like my coping with PD was going to be no different. However, I am realizing that this is a whole new beast. My family, while loving and well-meaning, are no help at all. My mother said one word when I told her about this: "Huh." My dad burst into tears, one of my brothers acted like I was dying in front of him while my other brother and my son refuse to even discuss it. I come from a family that is weary of health issues. Brain cancer took my youngest brother at 18 after years of suffering. Cancer runs through my family like water in a river. So it isn't that they are uncaring in any way but "used up." They just have no more internal resources to deal with one more thing. So I am having to just grin and bear up as if nothing is wrong and pretend for everyone's sake that all is right with the world. It is a game that is exhausting me. Anyway...that's sort of why I'm here. I desperately need to connect with others who understand this ordeal. There are no support groups locally and I live in an extremely rural area with few resources. (San Francisco is a 300-mile trip...one way.) My primary care is a nurse practioner who wants to treat this with herbs. Nothing against that but not exactly helpful either. My neurologist seems capable and thoughtful but she has the personality of a rock so it's "nothing but the facts" from her. I have no access to a MDS as it is simply financially, physically, and logistically prohibitive. I just here trying to find a tribe of sorts so I can haul myself through the days without going insane in the process. Sorry this has been so long but this is my first discussion of this issue since April and I have a lot built up inside. Thanks in advance for reading this even though you all have your own trials. It is appreciated....
Hello, I started reading your stories last night. I was diagnosed with PD about three months ago by my MD. Just saved up enough money to make an appt with a nuero. Best guess onset was approx 4 years ago. But I was a butcher/meat cutter, MD wrote it off as typical nerve damage in my shoulder after so many years of abuse. 2010 I started having migraines and cluster headaches and migraines, (probably unrelated to PD) but they became the center of attention of my life and my nuero's. All I know is after the migraines went from four to five a week to one or two a week, I now have PD on both sides of my body. I am on no meds for PD. I have beed diagnosed as bi polar with anxiety. They have me on a ton of meds for that. Which I guess I have to agree with. Last night after my nightly cocktail of 2 mg of kalonipin, 150 mg of trazidone, and 200 mg of neurotin (which is supposed to help with tremors and migraines) I was up till six the morning fighting with my legs trying to get the shaking and rigidity to stop long enough to fall asleep and was up at ten this morning. By and by.....nuerotin helps with migraines....does nothing for the tremors. Oh yes and I had a heart attack in june of 2011. Blood clot from knee surgery went to my RCA. Good times. I hope I didn't drag on for my first post. I have a lot of questions and no one to ask. Lost my job Dec. 2010 so no insurance, waiting on disability hearing, we will see how it goes. soulsatzero aka keith