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Found 10 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. Hello, first post for me as I recently have overcome the "denial" phase and am "coming out" about my diagnosis I received as a 36 year old man, almost 3 years ago. My first symptoms showed up as a small tremor in my left index finger and an overwhelming feeling of anxiety. I chalked it up to the affects from an unwanted marital separation and stresses of losing my wife and the ensuing divorce litigation and custody battle of our 1 year old daughter. Those things have since stabilized, but my PD has not. The small tremor has now taken over my left arm and shows itself on my right side occasionally as well. I move noticeably slower and have trouble with little things like typing, tying my shoes, eating, etc. I initially visited 2 doctors in my hometown, Springfield, IL. Since I was in denial, I felt almost offended that they both immediately wanted to put me on medication, as though they were driven by the pharmaceutical companies. I reluctantly started Azilect, only in hopes that it would hide my tremors. After about 3 months I didn't feel much difference and decided to stop it and find another physician. I found a God-sent Angel of a doctor, Dr Dyveke Pratt, in Peoria, IL. who did not push medication on me and instead prescribed cardio exercise, healthy diet, and less stressors in life. As symptoms progressed, we did decide to try Mirapex, to which I did not see relief. Admittedly, I am not a good prescription pill taker and probably did not give it a true test. Upon that realization, Dr. Pratt and I decided to once again eliminate medication. She prescribed me with 6 months of daily physical exercise, getting my heart rate above 130bpm for 30 minutes, every day. It's been 3 months and I haven't missed a day. I'm in great physical shape, but my tremors have gotten worse, and symptoms are progressing. Now I find out that Dr. Pratt is leaving the INI practice and I have no inclination of where she is going. I feel that medication is in my near future but am scared to death of it. I do not want to start Carbidopa/Levodopa, not yet. If that's the "big gun", I want to wait until I can't live without it. So, I'm in search of a physician in or near Central Illinois, and am open to any thoughts, advice, experiences, or questions from anyone listening... Thank you
  3. Support Groups

    I was officially diagnosed last Friday with young (I’m 49) “early, mild PD.” No tremors, but gait instability, hand weakness, rigidity, and dystonia; all on the right side. Worse symptom is my right foot jutting out, which makes it very uncomfortable to drive as I can’t keep my foot properly aligned on the gas pedal. Have started Mirapex. Right now, I’m flooded with conflicting emotions that range from denial, to anger, to the need to be Superman and take control of everything and make jokes, to relief it’s not cancer, to becoming depressed when thinking about the future. If this is “mild,” what do I have to look forward to?!!! I live in the SF area (East Bay) and have tried calling two support groups form a list that Stanford provided. Left messages over the past few days and no one has called me back. (That sucks!) Is there a better way to find a support group or someone I can meet with face-to-face to just talk? I have a great husband, but not sure he understands what I’m going through. He’s a doctor, so he gets the clinical side of things, but the emotional stuff is hard for him to process. Thanks in advance for any guidance on how to connect with local people who are going through this.
  4. I am 46 years old. I have had symptoms of Parkinson's for 4 years, and I was officially diagnosed with Parkinson's July 2014 after my symptoms got very bad to a point where I could not eat a meal without almost choking several times, move my left arm or open my hand without assistance, or being able to write legibly. This diagnosis was confirmed afterwards with responses to medicines and with a MRI (August 2014) and DatScan (Dec 2014). I have been to a neurologist and movement specialist the past year, and my medicines have been adjusted to try to keep up with my on and off periods. Where does a mid-40's person fit into the classification of Parkinson's disease? Is this considered to fit into the category of early-onset Parkinson's, or is it normal onset of Parkinson's, or is it somewhere in between? My symptoms have been steadily progressing the past year where it went from left arm and throat/mouth/speech to now it is affecting my right foot and both legs during off periods. I have been looking for resources on what I can expect for my life for the next 20 years, what case studies have been done on the rapid progression of symptoms, and successes of DBI and other clinical trials for someone like me, as well as medicine combinations that have helped respond to the symptom progression. Within the past three months, my on periods from the carba/leva has steadily declined from 4.5 hours to 3.25 hours, and the time it takes for the medicine to work went from 30 minutes to almost 50 minutes between doses. The off periods are terrible. The effects of wearing off are much worse now than 6 months ago, and from the time the dyskinesia stops and the total weakness begins in left arm and throat/voice is now about 20 minutes, where it used to take close to 50 minutes. My dosage went from [two 10/100 carba/leva 3Xday, one 1-mg Azilect, and two 100-mg Amantadine every day] in March to [two 10/100 carba/leva 4Xday, one 1-mg Azilect, two 100-mg Amantadine, one nighttime ER 50/200 mg carba/leva] in June to [two 100/100 carba/leva 5Xday, one 1-mg Azilect, two 100-mg Amantadine, one nighttime ER 50/200 mg carba/leva] last week. I can't keep increasing medicines because carba/leva is making me nauseous every time I take it. There must be resources and people I can reach out to that are my age who are going through the same things I am going through. How much longer can I expect responses to medicines to keep declining before I am fully disabled? What other options are there? Does DBI work for my situation? I really do not want to live fully dependent upon others to feed me and take care of me or be in a nursing home within the next 15-20 years, but if this is the reality, I would like to know it now so I can figure out to handle it. Please help me. You may not be able to answer every question above, but any direction on where to turn is appreciated. I like my movement specialist doctor, but I am experiencing changes so fast between visits that I would rather talk to others who have actually been through this thank you
  5. Shakin' but not Stirred

    I am 39 years old and was diagnosed two years ago with PD. I am now trying to do my part to raise awareness for PD and raise funds for research so I don't have to live with this disease for the next 50 years of my life. "Shakin' but not Stirred" is my currently philosophy for living with PD. Accept it, but don't let it rattle you. I have created a Fox Team and Booster.com fundraiser for those with a similar outlook. Please visit my Team Fox page (http://www2.michaeljfox.org/goto/WalkTall) to pick up your "Shakin' but not Stirred" T-Shirt or one of my other designs: "Shaking Lad" (in the format of the Breaking Bad logo) "Puck Farkinson's" "got L-Dopa?" You can also donate if you don't want a shirt. Thanks in advance and please spread the word.
  6. Hello everyone, This is my first post on here. I don't officially have a diagnosis of PD yet, but my neurologist basically said it is 50/50 whether I have PD or Dopa-Responsive Dystonia. The more and more I think about it I feel it is PD. I'm 22 and I just got my first job out of college as a reporter in Southern Idaho. I love my work, but between my symptoms, which seem to be slowly worsening, and knowing absolutley no one here I am very depressed. I don't know what to do. I'm trying to find a doctor down here, and I have a neurological appointment set for April, but everyday I feel like I'm sinking. I have no friends here. I like my coworkers, but they're all much older than me. I was living with my girlfriend, who is amazingly supportive. She was working and things were good, but then she got hit really hard with M.S. like symptoms that have made it difficult for her to function. Now she's in Seattle to see a doctor, and I worry that she isn't going to be able to come back. I feel like I have no real friends anymore, certainly none that understand what I'm going through. I love to get out and take photos, but its cold and the roads are treacherous so I am unable to really go anywhere. I'm scared to go out alone becuase I could easily become stranded on the roads or anywhere else if I mistime my dose. The last couple days I've been incredibly depressed. The only thing I get any enjoyment out of my job, and I worry that sooner or later I won't e able to keep up, especially when I screw up my dosage, which has been more frequent lately. It seems like Sinemet is starting to lose its effectiveness. I'm sick of being frozen when I mistime my dose. I'm sick of almost always being uncomfortable. I'm tired of being alone. What I hate most of all about this whole situation is the fact that it's taken my dreams from me. I no longer feel that my career aspirations are possible for me. There is no way I can devote the time or energy needed to get where I want to go. I want to start a photography business but how realistic is that really? I feel uncomfortable moving too far from my parents because I feel that I'll ultimately have to move in with them. Thankfully they love and support me, but obviously I'm not thrilled about this. I'm scared of what will happen when they get older. What if they fall ill? What happens when they die? I'm terrified of ending up on disability because I feel that my benefits would be the first thing on the chopping block when the government tries to balance the budget. I apologize for the length of this post, and for the abject hopelessness of it. I'm sure that many of you felt this way when you were first diagnosed. How did you get through it? What keeps you going in the face of this terrible disease? How do you cope with the isolation and lonliness of living with it? And how do you cope with the horrible wearing off periods?
  7. Hello - it's time to for my wife and I to stop trying to go at it alone in managing her PD and side effects, and I'm really glad I finally found these forums - in lurking the past few days, I know we’re not alone in what we're going through with side effects, med management, and looking at alternative treatment. I found others who are having similar issues, including a thread from LoveofMyLife that prompted me to share our story of psychosis. It’s a very long one – sorry for that, but so much is going on and I’m sharing in hopes it helps someone else while we struggle with the disease. And I think sharing this story will help me. Our Family Dynamic: My wife at 44 years old has PD (Dx at age 41); I am the caregiver; we have two young children, the older diagnosed with ADHD, whose behavior can make my wife’s tremors worsen very quickly. She’s been on various medications, mostly carbidopa/levodopa, agonists, as well as depression and anxiety meds – AND ADHD meds! Most recently, her dosage of Stalevo increased. (I’ll share the dosage history of her med cocktails later – or she may herself, once I convince her of the value of this group – she has slowly begun to open up about her disease now that it’s become too obvious to hide). We have a big challenge in that we don’t have doctors who provide holistic treatment, which will be changing soon; the MDS treats the PD…and a separate psychiatrist treats the side effects of the PD meds (even if the med dosage is causing the psychological effects), as well as depression/anxiety…but they don’t talk to each other to jointly treat her. Very frustrating. Today: As I write this, my wife is in a behavioral health unit on a 72 hour involuntary hold (the dreaded “5150”). We’re talking about a completely normal, independent, otherwise healthy, woman who is absolutely sane – when the PD meds are right. This is her third stint in a behavioral health facility and her second involuntary hold in 12 months due to psychosis – all stemming from the same triggers and delusions: That she has uncovered an international art/antiques crime syndicate, and they now know she has discovered them. She is convinced this group is plotting to kill her and her family in order to silence her. That they’re following her, have “bugged” our house, tapped our phones, and will kidnap our children from school. She has called the FBI several times this week – even from the BH unit - to report this criminal syndicate – simply to make sure they know what’s happening, and then and only then when her word gets out, she’ll feel safe that they can no longer silence her; she has told the story to a lot of friends and family to make sure they know, in case she or my family are killed by the syndicate. She also plans to make sure every news outlet knows about the crime ring and who is involved. She has always thought like a private investigator – even before the disease, but has never made these types of connections until the meds and lack of sleep get to her. I’ve attempted to reason with her about coincidences, that it wasn’t a person’s shadow she saw outside at 3am – it was a ‘possum, and that even if there is some sort of international art crime ring – and there are – she’s the least of their concerns and wouldn’t care about her. Yes, there IS plausibility at the heart of the stories, since there are indeed art crime circles…but the links she’s making, and that there would be such an intricate and costly plot to assassinate her simply are not real in the outside world. She comes in and out of lucidity, recognizing this is in her head at one minute and can describe the more realistic reasons for her connections, then later on moves into full blown psychosis and fear. This has gone on now for three days. Regardless of when she’s out of the episodes, what she’s seen and experienced is very REAL in her mind – so I’m expecting some PTSD out of this. I finally get to visit her this afternoon. Rewinding One Year Exactly one year ago – to the DAY - the same thing happened; it was her first psychotic/paranoid episode and I had never experienced anything like it in my life. The same triggers as now, stemming from art work and secret messages she believed were contained in a box of books on tape she picked up at a local thrift store (since she is unable to work, thrift stores give her a sense of purpose – buying little gems people give away and attempting to resell for a profit, including art and antiques). She was convinced the tapes had information about the syndicate – and the people were in the store watching her. One tape in particular, The Odessa Files, was the one that held the secret messages; she bought them, knowing people were following her out the store, and she took them to the local sheriff station to explain she thought there were secret messages contained in the tapes. They thought she was crazy, put her in the back of a deputy’s car, and drove her to the ER. I was on the other side of the country at the time, so called her psychiatrist to get him involved and returned home immediately to be with her; in the meantime, she was transported to a local behavioral health unit under the care of her psychiatrist. She was put on anti-psychotics, her PD meds were stabilized, and her dosages were changed. She was released to me 4 days later, and did ok – but still needed to get to the bottom of things. At the time, she was on Sinemet, Mirapex as well as a few others prescribed separately by her MDS and psychiatrist. She seemed fine for a couple of weeks –although she did make me listen to the tape, and it was just that…the Odessa File being narrated. I convinced her finally. Then four weeks later, she started thinking back to the cassettes and other triggers related to the crime ring – going back to the thrift stores we’d discussed cutting out of her routine; she needed closure to prove she was crazy to believe it all – that the art and other antiques were being “laundered” through thrift stores by an international ring. She quickly became convinced she had solid proof, and that they were following her again and in our attic, even hiding in tiny crawl spaces. She was convinced they piped poisonous gas and smoke coming through the chimney into our house, and they were going to burn the house down, that they disconnected the water to our house so that we couldn’t put out the fire. She bought several fire extinguishers and used firemen’s jackets and made me keep them on the kids’ beds while they slept. One night, she heard footsteps on the roof, went outside, and saw someone jumping from our house into a tree (that didn’t really happen). She told me they had just covered our roof with a cloth saturated in flame accelerant and she SAW IT sitting there, why didn’t I see it? I went out there and tried to show her it wasn’t there, but there was no convincing her. She settled down and seemed fairly OK, but called 911 while I was asleep. The deputies came, and she didn’t think they were real deputies and was terrified; so she made them get the fire department (with the parade of sirens and lights at 1am). She went to the hospital with the fire department, which is where she wanted to go. The next morning, while I was talking to the nurse over the phone, I heard a commotion – my wife was escaping from the hospital, convinced the doctors and nurses were hired by the syndicate to kill her. She ran out to the parking lot with her wooden cane, jumped a fence, chased by hospital security. She broke her cane on the ground to make a sharp weapon to defend herself from them, but was tackled, brought back in, restrained, sedated, and put on a 5150 hold… She was moved to a local university, where a panel of well-known PD specialists AND psychiatrists jointly observed and treated her. A few days later, she was released, doing much better, although still with a few lingering questions – and perhaps a bit of PTSD – because what she felt happened was so vivid and real in her mind. I have a tough time relating to this, but I’m trying my best to not force reality upon her at the wrong time – which seems to make it worse. Over the next few weeks, she slowly regained her clarity, and everything was great. Since she’s terrible at remembering to take her meds, I put Med Helper on her phone and programmed everything; urged exercise and diet changes. Even still, she’d forget, which really only had an impact on her tremors and movement. Then her psychiatrist put her on Concerta, then Adderall, then Vyvanse, thinking she was ADHD, saying it would help with PD. Really? Someone who can’t sleep already, we’re giving a stimulant to…she has recently taken herself off that, knowing it’s making her worse. She’s off that now for one week, but I think she’s been taking way too much carbidopa/levodopa AND Stalevo…and still not sleeping. That’s when the trouble began this time. So there’s our story as of today! She’s feeling better, and we are now in the search for a holistic treatment center, and I’m investigating various universities in Southern California. She’s even considering DBS more now, which terrifies her because of the 1-2% risk with our kids being so young. But she recognizes this can’t go on. In the meantime, I’m going out of my mind, struggling balancing support, kids, and is so exhausted it’s impacting my job – which I need to keep in order to support us; and I have to fly out of state again on Monday! Maybe it’s time I find someone to talk to, but writing this out for the first time ever, as long as it is, actually makes me feel a tad better. History on the Diagnosis: My wife is 44 years old, diagnosed with PD 2 1/2 years ago - she'd been continually diagnosed with essential tremors for 7-8 years prior; the tremors started in her left arm, and within 18 months of PD diagnosis, spread to both sides of her body and began affecting her gait. In February 2012, she was put on a test run of Carbidopa/Levodopa. If it works, they said, she has PD. It worked. She was crushed, and I felt so guilty for pushing the neurologist who kept telling her it was just essential tremors, which made her feel better. Even on the day she was tentatively diagnosed with PD and given carbidopa/levodopa as the test, the MDS still said it was essential tremors after doing the standard movement/rigidity tests. He was ready for us to leave, but I insisted he do the tests one more time – “watch her walk AGAIN” (I'd seen it every day, and it seemed like there was more to it). With the look in his eyes after the retest, I knew he’d finally seen what I saw in her gait. Doctors are humans, too.
  8. Does anyone in this forum still ride? It's going to be my final stand. Meaning that is what I am hanging onto the most. I mean I have more important reasons to stay strong , my husband, my kids etc... But this I do for me which makes me better for them, anyway, I'm trying to talk with other riders but its hard to find any. I started a FB page called Shake, Rattle and Ride;). I also know the therapeutic benefits of just being around horses is huge. They don't care what you look like or your trembling or that your in a chair, they usually just like the fact that someone is petting and scratching them. Well horse people let me know if your out there. I'm going to go ride now:-)
  9. Has anyone gone on Disability after battling Young-Onset Parkinson's and not being able to work? I have been diagnosed for over a year and things are becoming increasingly difficult. I have bad Dystonia along with my Parkinson's. I can get by now, but when you have these days it really makes you think. I am worried I would lose our house, cars, insurance and a lot more. Has anyone gone through this yet and how did you and your family fair throughout the troubling times? BTW - this is my first post. Thanks for listening!
  10. Great story from Fort Worth, TX about PD warriors and their intensive training from a former champion. http://www.dallasnews.com/news/local-news/20120428-boxers-step-into-the-ring-to-fight-parkinsons-disease.ece Gavin Mogan
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