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Found 15 results

  1. Hi, Female, mid 40's. Background. I have disc bulges in C spine as well as lumbar. Have had a cervical fusion quite a few years ago. Symptoms. 5 yrs ago started having some swallowing difficulty, solids only. Still have difficulty with solids only. Hasn't worsened. Had endoscopy, barium done. Normal, except weak lower esophageal sphincter. I have heartburn though. Also for 5 years, paresthesia ( tingling feeling) down left side of body. Neurologist said was due to migraine with aura and vertigo. Which I do have. 2 years ago I had a bad fall from standing and hit the back of my head hard. No concussion/loss of consciousness. No imaging was done, though I did see a Dr. My head still hurts where I hit it to this day. For the past 2 years my shoulders feel weak, especially when trying to roll over in bed. A year after that I noticed left thigh feeling of stiffness. I can move it normally though. It feels constantly stiff. Some restless leg when trying to fall asleep. Last year I started to notice internal head tremor feeling, base of my neck only, very slight though and only when in seated position. Last 6 months I notice if I hold my arms outstretched I have shaking on occasion. When I put them down and rest them, it goes away. I have dry mouth. No I am not on medications. Past 2 months I have had loss of balance, only twice though and not bad enough to fall down. Started having vivid dreams the past few months. Pinky finger on the opposite hand (right) has twitched when holding my hands out. This pinky finger also migrates away from the rest of my fingers when outstretched. I do have a referral in to see a neuro but it can take up to a year to see one. Do these sound like Parkinson's symptoms to you? I find it unusual that the thigh muscle stiffness and tremors happen on opposing sides of my body. I have no resting tremors.
  2. Hello Dr. Okun, I have had PD for 19 years. My main problem is severe tremor that is not adequately controlled by medications including madopar. As a last resort, my neurologist started me on clozapine a year ago which significantly reduced my tremors. However, the severe side effects (increase blood glucose, excessive weight gain of 31 lbs) led me to stop clozapine despite being on the lowest dose (12.5 mg BID) for a year. Needless to say my tremors returned with a vengeance and I suffered severe muscle cramps. I notice now that I can no longer tolerate madopar as my shaking has worsened. The shaking after taking madopar is characterized by 2 distinct episodes : Episode 1 occurs only sometimes 15-20 minutes after taking madopar, my head and limbs shake violently and my neck muscles become tight and stiff. This goes on for a short period. Episode 2 (wearing off period) occurs without fail: 2-2.5 hours after taking madopar, my head, limbs shake shaking severely and continuously and my neck muscles continue to go tight. These episodes last up to 45 minutes to an hour without fail following each dose of madopar. During this period, I will also experience nausea and start retching. I also experience a strange, whooshing sensation in my head. As episode 2 occurs without fail, I have developed a phobia for taking madopar. I am currently prescribed on madopar: levodopa (200 mg), benserazide (50 mg) 5X daily. But I am taking it 4X a day because of the adverse reactions described above. I feel much better without taking madopar but the downside is that I can barely walk. In the morning (before my first dose), my body feels relaxed but once I start, I experience the uncomfortable side effects of taking madopar. This has been going on for over a month. I do not understand what is happening to me. Why am I reacting to madopar in this way? Is this life-threatening? I have arranged to see a surgeon for a DBS consult but it will be months before we can move forward with this if I am approved. I would really appreciate your thoughts on this. Sharon Lee
  3. Hello, we are a group of students who are attempting to create an improved device to counteract the tremors caused by Parkinson's Disease when using certain utensils and tools. If you could take a few minutes to take the survey linked below, it would be very helpful in fully understanding and solving this difficult problem. Thank you for your time and help. https://docs.google.com/forms/d/e/1FAIpQLSf-Gwa5Zlf2EwxMOECpD44GRisRhIvI_cq9rTbgL7Ux2Z0Uww/viewform
  4. Hi Everyone, I am new to this forum, though have been referencing it for years. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. I am so sorry to everyone out there who is so frustrated and disabled by this disease. It is so hard. My family is trying to figure out his dosing schedule. Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I have always wondered if his other pills make the Parkinson's medicine less effective. Additionally, he wakes CONTINUALLY in the night shaking violently. This has become a terrible problem as he wakes up every hour. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my mom is trying: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily My dad does do a recumbent for 5-10 minutes a day and knows to try not to eat protein with his pills. I would sincerely appreciate any advice, suggestions or tips on this schedule. Thank you so very much, Amy
  5. Dear Doctor, First off, thank you so much for being so available to all of us who are going through this together. Parkinson's is so tough, and I never dreamt our family would be in this position. I want to do everything I can to help my dad and make it easier on my mom to care for him. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. My family is trying to figure out his dosing schedule, as he is no longer having any really 'good on times.' Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I am reading everything I can on Parkinson's and just ordered your book as well. A typical day: Morning is typically his best time, from 8am to about 11am. During this time he will do about 10 minutes on a recumbent bike (he just starting doing this the last few weeks, before that, exercise was minimal). He says he feel just okay, but at least he is pretty alert. After he takes his 10:30 dose of pills he starts to go down hill and falls asleep. He sleeps on and off throughout the day in between his doses. He also shakes. I have noticed that sometimes before his next dose he seems funky and out of it (I'm guessing the dopamine has worn off). Also, he is freezing a lot now and it takes a good 10 minutes for him to get moving again. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. My mom tries her best to space out the food, especially if protein is involved. She also tries to keep a dosing journal to write down side effects but is getting confused as to whether the tremor is the essential tremor, an 'off time' tremor, or too much dopamine tremor. When he goes to bed, he usually will wake up continually, it's rare for him to sleep. There was a time for years where his dr. prescribed 4 pills, 3 times a day. We have changed that within the last 6 months because obviously that was not working at all. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my dad is taking: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed When he wakes up in the night, my mom gives him 1 levodopa usually around 4am. -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. Recently, we are trying to cut down the Propranolol to 240mg a day, he has been doing this now about 2 weeks, but he still seems really sleepy. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily I would sincerely appreciate any advice, suggestions or tips on this schedule. It's just so sad to watch the progression. I want to leave no stone unturned and try everything possible to help. Thank you so very much, Amy
  6. Hello everyone! My name is Salonee Darbari, I'm a high school student currently enrolled in an engineering class. For our senior capstone project, my group is planning on creating an arm brace that would reduce tremors for those with Parkinson's Disease and Essential Tremor. In order to proceed, we need to send out a survey to see if there's any interest for the product we want to make. Our group would love it if you all could help us out by taking the survey. All responses will be anonymous to ensure privacy. Here's the link to the survey: https://docs.google.com/forms/d/1RBxJbR-WfjuW-ES7_TptzY3FHdWR2CEbFpU2Aq-HRUg/viewform?usp=send_form If you have any questions at all, feel free to send me a message! Thank you so much!
  7. I'm a 53-year-old man approaching the first anniversary of my Parkinson's diagnosis. I'm not on any medication for it yet and my primary symptoms are tremors in my right and left hands (tremor first presented on right side and is worse than the left). I can manage but some of my fine motor skills are compromised (clipping my fingernails, shaving, using a touch screen, etc. are getting more and more difficult). My neurologist said the standard Parkinson's meds don't do much for tremors. I read Amantadine might help, but most PWP on these forums have negative experiences with it. What do you think? Would physical therapy help?
  8. Good Afternoon Dr. Okun I would like to have your thoughts on using Primidone for tremors. My Doctor has asked me to try Primidone since the Sinemet Challenge has not taken away any of my tremor but has slightly smoothed my arm swing. Starting me at 25 mg working up. My question is. If my tremor slows or is under better control on Primidone would this rule out Parkinson? I'm thinking this should have been tested first. Would a patient with Parkinson see any change on Primidone? Do you ever use Primidone to rule out Parkinson? If so how do you start them..taking It morning or bedtime? I am really tossing over it, should I try the Primidone or not? I know you can't tell me yes or no...my choice but I'd like to have as much info as I can. I respect your opinion on this matter. Thank you, Laura
  9. Hello, I'm new to the board ... My mother was diagnosed with PD in 1998, had the DBS system in place by 2001. Last Monday night she called me and said something was wrong and asked me to come over. When I got there, she looked like a puppet on a string. Jerking, tremoring hard and spasming. Now, I had been there only two hours before and noticed only her leg tremoring. Now, it was so much more. Her speech was slurring and it was like she couldn't get the words out. I thought she might have had another stroke (Aug 2013). I tried to reach her neurologist and all his service said was to take her to the ER. So I did... They couldn't do anything for her and we sat there for six hours before they brought that info to us. By that time, the tremoring/spasming had slowed down or had all but stopped. When she laid down, her body didn't seem to have such issues. I called the neurologist the next day and spoke with his nurse. She told me to start my mom on 1/2Sinemet (quick release 25/100) three times a dayand still have my mother take the Sinemet (controlled release) at 2 tablets, three times a day. If the tremors/spasms got worse, then have her take an extra 1/2 sinement (25/100) if it got bad. Well, we have... Tuesday: no issues (other than light tremoring), Wednesday: no issues (other than light tremoring), Thursday: no issues (other than light tremoring).... though Friday, Saturday and Sunday, she expierenced the same jerking/tremoring/spasming. Usually it started about 6-7pm, on Sunday at 3pm but she admitted she didn't take her meds on time. I was with her Sunday night and I noticed she kept hunching her shoulders, wiping her nose/mouth and cursing softly. I don't know what to do... I'm her only child and there is no one in the family that will help me. I have two children and a husband, a job.... What is going on? Why did this come on so suddenly? What else do I need to tell the doctor? He wants to wait to see how the Sinemet 25/100 does... we have an appointment on March 24th. Help please???
  10. I am asking the group if I should see a movement disorder specialist for a second opinion. The neurologist I saw 3 months ago, and who I just followed up with gave me some very confusing and I think conflicting diagnosis. When I saw her 3 months ago, she said for sure I had small vessel disease, may be having TIAs and probably had Parkinson's because I had a lot of symptoms. When I saw her again this week, she was trying to tell me that my only problem is essential tremors, and she doesn't know why I fall a lot or have lost my sense of smell. Plus my balance is very poor, tremors have increased in the past 3 months. She's working off a brain MRI from 18 months ago, and has done no other tests. It sounds as though Parkinson's is difficult to diagnose - but I do have a cluster of symptoms that are troublesome enough to effect my everyday life. Tremors of hands, head and voice. Loss of smell. Memory word-retrieval problems, frequent falls, don't swing arms, pronounced balance problems, weakness on the left side (TIAs, Strokes??). I know you can't give medical advice - but should I just make an appointment with a movement disorders doc at a big teaching hospital? I would think that they would want some tests more recent than 18 months old. Thanks for listening to me babble. PattiCee
  11. I am new to this so bare with me. One of the things I notice about my tremor is when I take the dogs out and it is cold out side I start to shiver a little (this is normal for anyone in the cold). However on my right side where most of my symtoms are, I start to shake more and it seems like my tremor that is normaly not notacable becomes very amplified. Does this happen to anyone else? I have also noticed when I shake my saving cream with my right hand it seems it does not want to stop. Any comments are welcome Thanks in advance for the imput Blessings Adam
  12. I am: male, 50yo, diagnosed at 30yo, bil DBS activa for 3y; 1 tab of Lev/Bens(100/25mg) each 4h, 1 tab of prmxl(0,125) 3 x day and 1 tab of amantadine (100mg) 3 x day. Along the last two months I started feeling what - at least for me - is a new symptom - severe tremors on the spine/neck/head region. And even worse - it is disconnected from off states(sometimes I feel the tremors when off but in most cases it occurs when I as very on! And worst - id does not seem to respond to Levo/Bens or pramipexole, or amantadine, or even entacapone dose adjustments(my physician is working on that without success). So I (desperately) call for your precious advice: 1) Have you seen cases like mine(I particularly have not seen complaints like this)? 2) Is it possible that's not linked to pk - another disease?? 3) Any influence of DBS settings?? Thanks a lot once more!!
  13. Hello. My 81 year-old husband was diagnosed with PD in November (though we think he's had it a couple of years). Nothing bad yet, just a slow shuffling gait. Then in December, a few weeks ago, he came down with pneumonia and was hospitalized. While there, he received an antibiotic which I believe is called levoquil. The day they started him on that, he suddenly displayed strong tremors in his arms and hands, chin quivering, legs were twitching, and he stammered to the point he could barely be understood. The neurologist on staff put him on clonozepam, or something that sounds like that, and the tremors largely stopped. My husband was then weaned off of the clonozepam. Now that it's been a few weeks, there's no residual twitching or tremors. My question is, do you think the pneumonia infection could have caused the tremors, regardless of the PD, or could the pneumonia infection have caused the tremors because of the PD (essentially kicking it into "high gear" temporarily), or could the tremors have been a side effect of the antibiotic? Thank you for any light you can shed on this.
  14. Hello Dr. Okun, I am a 56 year old female. Three months ago, I put 2 lb. wrist weights on each wrist and exercised my arms lightly for about 10 mins. I typically do this every other day using barbells. But on this particular day, I added the wrist weights. During that week, I noticed my left thumb and index finger would tremor for several seconds whenever my arms were rested. That same week, I was awakened from sleep by the action of my left thumb and index finger on my pillow. Three months have passed and my left thumb continues to tremor when I position my arm on an armrest or when my wrist is bent. My left index finger will tremor when my hands are folded on my lap, but only for a few seconds. In addition, there is an almost constant "twitch" that can be seen between my index finger and thumb when resting. Some other observations that may or may not be significant are I often find myself walking with my left arm flexed in front of me with my hand just hanging. (But I have no loss of arm swing whatsoever otherwise. No stiffness, no slowness.) And, prior to the onset of tremors, I noticed a rather pan-faced appearance when I look in the mirror. Perhaps, it is just normal aging!? My question to you is does this sound like the beginning of Parkinson's? Or might I have damaged something with the weights? (I have absolutely no pain, numbness, tingling etc.) Should I wait to see if other symptoms pop up before seeing a movement disorder specialist? In other words, is it too early for a diagnosis? I am grateful for any advice you can give me.
  15. Dear Dr. Okum, I met with a top neurologist is California - a MDS at one of the top teaching universities hospitals. When you and I last emailed, you said my story was complicated and it was good that i was seeing a neurologist specializing in Parkinson's. This is my third neurologists and I have met with him two times and have had conversations on the phone with him. I am scared that I have M.S.A. as I have numbness sensation in my toe and forehead even though I passed their tests for testing sensation for numbness, etc. I am confused with what the neurologist said I have with regards to tremor - here is the actual conversation over email between my husband and the neurologists (I have herniated discs C5/C6, C6/C7 - bulging, stenosis - as referred in conversation below): When we met at the last appointment, you said she didn't have Essential tremors, but if I heard you correctly during our phone conversation, she does have Essential tremors. Please clarify. Hi ****: On my examination she has a mild postural tremor that is consistent with Essential tremor (and is distinct from Parkinson's disease). Could these go away with time or are they permanent? Her tremor could relate to the cervical cord disc. Therefore, as we discussed, over time this tremor could resolve. Is essential tremor considered a risk factor for Parkinson's? No Thank you. She says she feels the tremor in both wrists when she is laying down or arms folded- what are these tremors called if they are not considered resting tremors? The tremor associated with essential tremor can be observed with arm or hand positions At rest? YES this can occur. If it only appears as pull rolling it is resting tremor~ Parkinson's but if she can feel it when arm is at rest- arm supported without pill rolling motion it is not Parkinson's. I just want to clarify for her. Hi This is my last email on this subject. The predominant tremor in PD occurs with limbs in a relaxed position, eg seated with arms resting on the lap. The predominant tremor in Essential tremor is with the hands outstretched and/or moving to and fro. However, certain limb or body positions where the limb is not completely related can provoke tremor in Essential tremor.Finally, the sensation of an internal tremor is not the same as tremor that we are talking about eg a rhythmic movement that can be observed by others. So, from the email conversation between my husband and the neurologist/MDS we are confused. I feel a tremor in both wrists - right started first and then the left started six months later. I felt weakness in my wrist and the following day the tremor started - it happened that way with both wrists. So, if I am feeling my wrists tremor under my pillow when laying on my side or when my arms are folded, what kind of tremor is this? Thank you for your time.