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Found 12 results

  1. I was diagnosed with Parkinson's on 2009 after 2 years of evaluation. My presenting complaints were stiffness and slowing. Subtle motor symptoms and other early signs - anosmia, severe fatigue, constipation, falls. I was started on sinemet 25-100 three times a day, which initially was miraculous, in an hour my lefthand, which was stiff to the point of postured, could move normally. I persisted and taking it in spite of extreme nausea, though this was helped someone with the addition of lodosyn. After about a year I begin to experience dystonia in my left neck and shoulder, and the effectiveness of the sinemet lessened. The neurologist I was then seeing did not recommend increasing it. I was tried on several other agents, dopamine agonists etc. I sought a second opinion at Brigham and Womens hospital, where it was suggested that I considerDBS. A year and a half later, I had a right brain GPI DBSi implanted. For the first 6-9 months it seemed to work quite well, after which it suddenly became less effective, the most effective electrode (zero) no longer working properly. It's still help some, but was no longer highly effective. I do not know if this was related to medication, disease progression or problem with the DBS, though the neuologist wondered if the lead had settled, and the neurosurgeon who replaced my battery two years later remarked that the lead might be slightly misplaced. Overtime I developed frequent on off fluctuations A year ago I went to one of the centers for excellence to be seen at a clinic for DBS reassessment and reevaluation. They did an extensive evaluation of my medication history, the DBS history, and spent six months working with programming. An MRI confirmed the suspicion that the lead was not optimal placed, and we agreed to revise the DBS, removing the current lead, and replacing it with leads on both sides of the brain, to manage dyskinesia which by then had developed as well as the dystonia and well as motor symptoms. These were both placed in the STN. The system was activated on April 20, 2 1/2 months ago. The symptom control in my right side has been easy to manage, with a very low voltage mostly managing dyskinesia. The left side has been much more problematic. It seems that I need higher voltages to treat my motor symptoms of slowing and stiffness, but these higher voltages cause stimulation induced dystonias that affect my entire left side. When the programming was started my sinemet was reduced by 50% all at once. I had considerable off time between doses and felt very drained of any sense of well-being. I have recently been switched to rytary, initially one capsule five times a day, just increased to two capsules five times a day. Sinemet discontinued. If I leave the stimulator at 2 V, it does help more with stiffness, but I continue to have dystonia, and dyskinesia particularly with any kind of stress or when I'm fatigued. I find the dystonia extremely disabling. It also affects my gait, which is aggravating a knee injury on opposite side, further reducing my mobility, and the ability to exercise. My neurologist wants to keep the stimulation up, and work on the medication. But I'm feeling stuck. I've had dystonia prior to ever being on medication, dystonia caused by medication and now dystonia caused by stimulation. Every time we meet, he is satisfied that I look better, but I feel worse. My instinct is that the stimulator programming needs to be changed, just based on how my body feels since the stimulation was added to the picture. Am I crazy? If I wait long enough will I accommodate to this level of stimulation? Was the stn a problematic choice given my tendency to have dystonia?
  2. My very first symptoms of PD were my toes on my left foot curling under it was annoying then and it's even more annoying now . I've been going to my MDS for Botox shots once a quarter . She's only actually hit the muscle once. I could feel the Botox going in like heat running down my leg or like Anastasia goes into your body before surgery . I had excellent results that one time and my toes literally didn't curl for the entire quarter. The other three times I had moderate to no results at all. Botox shots are very expensive and it is hugely disappointing when it doesn't work. I also take 1 Valium pill at bedtime to relax my muscles. This works on ny toes When the Botox does not what I'm wondering is what do other people do for dystonia and toe curling? Does your MDS give you the Botox shots or does the podiatrist or somebody else ? Should I just switch the valium entirely has anyone tried that ? Help!
  3. Wondering about Meds?

    I have an appointment to see an MDS in March and I am thinking it might be time to start on some meds. Every morning my feet are sore from my night time dystonia, and every day I have rigidity in my right sholder and my right arm has cogwheel rigidity all the time. Most of the time this does not bother me but the feet are hurting more and I am noticing they want to curl up again by the end of the day. The stiffness and sore shoulder is becoming bothersome as well. I am not looking to start l-dopa just yet seeing as I am 35 (I know they say starting it does not matter if you wait or not). Just think it is too soon for that. Any one have experince they can share with just taking some of the other drugs and if they would help. I would like to go into this appointment having an idiea of what the drugs may or maynot do well. Thanks for any advice Blessings Adam
  4. Mirapex/Re-quip/Neupro Question

    Anyone out there know whether the types of products above are helpful or would exacerbate Dystonia symptoms? Mike RXVANMAN
  5. Dystonia

    I know we've all touched on the subject of Dystonia here and there, but I thought I'd write about mine......... Way back in the beginning, years ago when I was in High School, my hands would cramp up and get "stuck" in various positions. Then by my mid 30's the Dystonia had progressed to include my feet. My toes on my left foot would splay out or try to curl under, while my right foot would attempt to fold it's self in half in the evenings, or when I'd get tired while out walking. Then about 8 years ago in my 40's when I would either be overly stressed or tired, especially when out walking my body would pull to my right side and my right hand/arm would pull back behind my left butt cheek, while folding down towards my wrist with my fingers tremoring away...... It seemed that each new issue stacked on the older ones........ Until I experienced an event last weekend that scared the hell out of me....... Now I'd been on my feet ALL day as I had spent the morning and afternoon at the NW Aviation Expo.., and then went home, changed, and Liz and I headed out, picked up Suzanne and headed up North of Seattle to a pool party with a large group of friends, for an potluck dinner and an evening of swimming..... Well somehow I messed up and missed my 9pm dose of Sinemet. By 11pm I was outside talking to a friend and realized I was a bit "off" and headed in to find one of the girls........ By the time I got through the pool area, the library, and into the dining area I wasn't doing well at all. I had to have someone go find either Liz or Suzanne for me...... Well they found Suzanne and she got me settled onto a couch and went to find my pills.......... She got a pill into me and held onto me until I was able to settle down finally......To where the girls could finally take me home.... I was still in no shape to drive........... The next day I felt like I had over stretched every muscle in my body..... and I'm still trying to recoup...... Along with everything else, this seems to be a new-normal for me since NOW when I get close to my next dose of Sinemet This is how I become................... DAMN this DISEASE!!!!!!!!!!!!!!!! I found a video on youtube that comes close to kind of showing what I went through.........although it's a bit mild by comparison........ https://www.youtube.com/watch?v=IwTdf7P4vJU My question is........ What types of Dystonia do you experience????? and "How do you deal with it??
  6. Dystonia experiences

    I'm having some sort of trouble today where I feel muscle burn in my arm and my hand feels slightly numb. There's an ache to it all. It will go away by itself over time and quickly after taking a Sinemet. Is this a common experience?
  7. Dystonia and joint pain

    I was roughly diagnosed about four years ago probably had symptoms for 4-5before that ,would just have tremors I have PD with essential tremors dystonia on my left side , all symptoms are left side only! I currently take 4mg Neuproo patch, propranolol 120mg,meloxiicam 15mg and tizanidine 2mg x2 @ day(10mg lisinopril and 30mg ar our thyroid supp) I get Botox injections every four months for a total I think of 500 mL per treatment. I have a bad problem with my left knee while I'm walking it tends to hyper extend of tried wearing a brace to limit the extension but experience a lot of pain and don't know if you could offer any suggestions or other treatments other than what you say I'm doing currently?
  8. Dystonia

    Hello all, My wife started suffering from dystonia around the time of her diagnosis. It started in her shoulder on the affected side. Exercise and stretching helped almost completely. It then moved to her feet and they would curl up in the shape of a C. She took botox injections for that and it helped a lot. A consult at Mayo gave the advice to take the same dose of sinemet, but at slightly shorter intervals. That worked and she discontinued the botox. Now it is in her lower back at night which leads to sleepless nights for her and me. How many of you have dystonia? I have read that it is more common for YOPD than for later onset.
  9. Sleep problems

    My 80-year old mother has Parkinson's, but probably at a fairly early stage with symptoms that are generally well-managed with Sinemet, energetic walking and other voice and physical exercises. However, since the death of my father a couple of months ago, she has experienced frequent (1-4 / wk) episodes of early morning (3-4 am) waking with a feeling of breathlessness, something like a pressure on her chest. She has to sit up and concentrate on breathing, and then has difficultly going back to sleep. This does not appear to be related to muscle spasms, rigidity, restless leg, need to urinate, nightmares or other sleep-related disorders commonly associated with Parkinson's. However her heart and blood oxygen levels appear to be normal and her doctor and cardiologist are convinced it's not a problem with her heart or lungs. She is able to get to sleep normally in the evenings and can nap during the day without a problem, and when she does sleep normally, she wakes feeling normal and rested. Since it seems to have become an issue since my father's death, and she is now living alone, we wonder if this might be some caused by a feeling of anxiety or depression, or if this sounds like a problem that could be related to Parkinson's, and we are desperately looking for ways to identify or at least narrow down the cause and possibly alleviate the symptoms.
  10. Crashing hard

    So at the end of my day I was standing by the time clock talking with our voice therapist at work...she knows what's going on with me (I confided in her in case I need her since my voice and swallowing are affected by the dystonia frequently) As we were talking I was relaying a story and went to move my hands, that I had clasped in front of me, as I stood there in the awkward position with my legs crossed as if I were on skates, I realized that I couldn't move my hands...........I told her, "Yes, like this, I can't open them up" she noticed when I began to relax some, but I still couldn't open them.......Eventually they did open.....I could feel it starting....what I ASSUME is dystonia (these were similar to what my MDS had pointed to as dystonia,,,there is very little pain when this happens).....As we continued taking- I realized that my right arm was bent, as if I were wearing an invisible sling...my hand was was frozen in time from some gesture I'd made in discussion...She looked at me and said, "Get outta here and go take your medication." I grabbed all of my things with my left hand and walked, invisible sling still holding me up, to the elevator...I pushed the button with my right elbow...same inside the elevator.........Then I was going to take video to document but it was raining right where I would've needed to sit my camera to capture it........I took my Sinemet and went to sit in my car until I felt my arm was able to drive. I haven't had any of this symptom since I started taking Sinemet 3 x daily....about 2.5 weeks (Which in my world prior to Sinemet, is nothing short of miraculous) I know my day was busy, I had a surgery and clean up and paperwork to do...but it wasn't overly stressful or even overly face paced...... Does this stuff just happen randomly? I mean I was JUST due to take my dose..and though i get slower or tremor more toward the fourth hour until I take it at the fifth hour, I haven't had this yet.
  11. I've been diagnosed with PD for about 2 years with the principal symptom being a moderate tremor in my right hand (and in my right leg from time to time). I take 1mg of Azilect per day. About 4 months ago I had a painful cramp in my left ankle and shin that last for about 5 minutes. That day I had taken a long walk after a week of limited exercise while on vacation. Last night I awoke from a sound sleep with a similar cramp in my left ankle/shin that last for less than a minute. That day I had undergone intensive physical therapy for a lingering case of tendonitis in the left foot/ankle. Does the fact that these cramps are not on the same side as my tremor make it less likely that the cramping is PD-related dystonia? What should my doctors and I be looking for to judge whether the cramping is a symptom which would signal that it's time to start a new medicine and stop attributing the cramps to high arches and resulting injuries? Thanks as always for your great insights!
  12. muscle spasms, dystonia

    I have had terrible muscle spasms that last for a few days tho come and go will. it seems might be dystonia. Can anyone tell me of any treatment that works for this terrible pain. I cant take cholozipam I did take 1/2 diazapam. I was thinking of trying a tens unit if I get one. I appreciate any suggestions. Have a Blessed Day joy
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