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Found 13 results

  1. Fifty-nine year old male with a fairly recent "probable" diagnosis of PD by an MDS after having a right hand/arm tremor (my only symptom) for almost ten months. Tried Propranolol (20mg, 1x daily), then Trihexyphendidyl (2mg, 1x daily), then Amantadine (100mg, 3x daily) with none affecting my tremor. In a previous post of mine on this forum where I asked you about Amantadine's effectiveness, you kindly responded the above meds were not optimum for treating tremor. You said Sinemet or a dopamine agonist would be better. Early this week in my follow-up visit, my MDS did prescribe Carbidopa/Levodopa (25-100mg, 3x daily) and stopped the Amantadine. How long is typical before I might notice a difference in my tremor? 1 week? 2 weeks? 1 month? I've read on this forum where some patients experience an almost immediate effect, but it looks like the length of time before it starts affecting tremors varies quite a bit, too. I'm just trying to set a reasonable expectation in my mind for the time frame before, hopefully, I see an improvement in my tremor. I have a follow-up MDS appointment in six weeks. Thank you for your time and commitment to helping people in this forum.
  2. Three weeks after first "probable" PD diagnosis by movement disorder specialist. Only symptom is tremor in right arm, started in the at-rest tapping of index finger and has gradually moved up my hand and arm over the past seven months. First neurologist tried one 20mg dose of Propranolol daily with no affect so stopped taking it; then one 2mg dose of Trihexyphenidyl daily with no effect, so stopped taking it. Then the first neurologist referred me to a movement disorder specialist. The movement disorder specialist diagnosed me with "probable PD based on MDS diagnostic criteria". The only other physical symptom, besides the tremor, is occasional shaky voice. No balance issues, no bradykinesia, etc. Now, for the past three weeks, the movement disorder specialist ramped-up to three 100mg doses of Amantadine per day. I have tolerated the medication fine, but the Amantadine seems to have a minor, if any, affect on the tremors. I'm not sure if the "minor" difference in my right-hand tremor is caused by the placebo effect, so my question is this: How long is typical before an Amantadine dosage like this begins to arrest the tremor? Am I being too impatient waiting for this to work? I wait for another 30 days before I see the movement disorder specialist's nurse practitioner to assess the next steps.
  3. Greetings all - I was diagnosed about two years ago. In working with a great doctor in Philadelphia, Ive settled (after some TERRIBLE attempts with other drugs) on a regimen of one Azilect and three Sinemet daily. The challenge is that the tremor that is peculiar to my left leg is now spreading to my left hand. I am really scared I am progressing rapidly, for lack of a better word. Whenever the hand tremor starts I instictively grab or cover my hand with the other hand, leg if seated etc. I've often been told, "I had no idea you had Parkinson's...wow." Super concerned that my disease will start will be more known and will affect my viability in the workplace..etc. I know the disease effects everyone differently but if there are any commonalities you might share that would help..Thanks.
  4. I went to a training with David Zid (creator of the Delay the Disease program). Wow! He is impressive! His theory is that most of the problems we have with PD are the result of bad habits. For example, people that get stuck are practicing the behaviors of being stuck. By changing that habit to a technique that gets them moving, he can stop people from being stuck. He had the class practice techniques for getting unstuck; getting up smoothly from a chair; exercises to improve fine motor skills; methods to return your writing to normal; methods to get rid of that PD mask, etc. My main purpose in going to the class was to ask him if there was anything that could be done about my tremor. To my surprise, he said there was. He said to decrease the tremor, I needed to do weight training and the key is that I need to do it with a heavy enough weight to reach exhaustion/failure within 5 to 25 repetitions (10 to 12 would be ideal for me based on my age). For example, if I was doing curls, the weight should be high enough that I should only be able to do 10 to 12 repetition before my bicep would give out. I will be starting tomorrow! I'll let you know how it goes.
  5. It seems like everyone is different in regards to how quickly some symptoms occur. For me once I started getting noticeable physical symptoms the rest seem to develop quickly. By that I'm talking over a year of course. The first real sign was my neck cramp. Now a year and a few months later my right side has become rigid. Enough to hinder my arm swing and cause walking/balance issues anyways. Yesterday I had my first real arm jerk. It was a strange thing to experience. I had been experiencing some jerky movements in my hands/wrists from time to time but it was interesting to be aware of the progression. I started to also get these weird sensations in my arms. It's like an internal tremor or sometimes an intense feeling that I have move my arms around. Do any of you experience those sensations?
  6. Now 76 yo living alone. Was diagnosed with idiopathic, tremor predominant PD in 2001. Held off PD meds until Feb 2012. As I was slowly getting weaker especially the last two years prior to taking meds. I started on Sinemet 100 x 3/d, 8am, 2pm, 8pm. This did improve my overall condition but it was short lived. One year later my condition suddenly started to deteriorate, about one hour after each dose of 150 x 3/day, to a point that I was worse off than when I started on meds in 2012. Little did I know that the Sinemet had started to wear off within one hour, I thought that I was having an allergic reaction as my tremor increased to a point that my arms would ache, I was unable to sit upright in my computer chair and really had to fight or get help to stand from a chair, I also needed help to get into or out from a car. I then started experimenting with the Sinemet by taking 1 x 100 to see how long each dose would last - just over an hour per dose. So if I started at 8am it would mean fourteen doses per day to ‘stay-on’. There didn’t seem to be a buildup nor that much of an overall improvement, but it was better than nothing. About Feb 2014 I noticed that in the mornings I felt good and with ZERO tremor as long as I did not take a dose. So I then decided to see how long I could go in the morning without any meds and discovered that I was fairly comfortable until 3pm when my symptoms gradually started to reappear which to me meant I am still producing some dopamine naturally during the night and there is a gradual wearing off throughout the morning and part of the afternoon, I feel in a more natural state. After much experimenting, for the past five months I have been starting my meds at 2pm, 150 Sinemet + 200 Comtan, same at 4pm, same at 7pm (2 then 3 hours apart) and that lasts me until between 10.30pm and 11.30pm, I usually try to be in bed before 10.30pm. I then find It very difficult to get out of bed at around 12.30 as the meds have worn off but it becomes easier as the night goes by. In the mornings my voice is normal, but after the Sinemet takes hold my voice becomes much weaker and my right cheek pulls upward so that I sometimes close my right eye when speaking (someone might think I am having a stroke). There is also a slight increase in my tremors and I don’t feel any stronger or improved movement. The other thing that happens is that if the meds wear off like when I forget a dose my state comes crashing down with severe tremors and weakness, leaving me in very much worse condition than I was before taking the first dose. At night I usually need to get out of bed at about midnight, 3am, 5am, the finally 7am, and each time is much easier. I really don’t understand what is happening and would appreciate an opinion.
  7. I'm 48 years old, and I've had PD-like symptoms for 3-4 years now, with PD diagnosed a year ago by DaTscan. However, I have many symptoms that seem very odd and not likely to be part of PD, in my neurologist's opinion. So I thought I would "ask around", so to speak, to see if others have had similar symptoms, and whether they were told these were PD-related. I've never been in a car accident, never had any injury or head trauma, no concussion. All MRIs are normal. My only two symptoms that are "classic" PD are: - Loss of sense of smell 8-10 years ago - Loss of left arm swing 3 years ago The questionable symptoms are the following: - Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest some of the time and action when holding papers or holding my hands/arms out in from of me - e.g. while talking - Left leg drags/scuffs when I run or walk and doesn't come forward as it should, with left knee hyperextending for no good reason - Left toes wanting to cramp when I walk or run (haven't cramped yet, but they definitely would like to one day) - Cervical dystonia, causing voice problems - helped somewhat by periodic Botox injections - Orofacial dystonia, with left side of face hardly moving (masking??) but right side of face grimacing significantly whenever I talk - some people see this and think I've had a stroke, which I have not - results in asymmetric smile/face - Tourette's/tic disorder since I was about 13 years old (Tourette's = too much dopamine; PD = not enough dopamine - go figure that I could now have both at the same time...) - Eyes close when they shouldn't at times, remaining closed for several seconds before I can open them again - helped by periodic Botox injections - Upgoing big toe (not sure if this is a positive Babinski?) - Slightly decreased palate elevation - Hyperreflexia, especially on left - Clonus in left foot/ankle, recently diagnosed - apparently ties in with the hyperreflexia as spasticity - Rapid bowel transit, resulting in weight loss without trying - started about 2-3 years ago That's a long list, I know - I just wanted to see if anyone saw any clues in any of this or similarities to their own issues. I do have two MDS neurologists I see, so I'm not trying to play too much doctor on my own, but they're as perplexed as I am. Thanks for any thoughts.
  8. Was diagnosed by a fairly prominent MD doc on 10-17. I am 47 and have had left leg and foot tremors, left arm rigidity and gait issues. I also had a treatment for Lymes (5 of the six bands positive). Doc mentioned a DAT test to more strongly confirm the diagnosis. In short, whatever it is, I am terrified. The message the MD Doc gave me was "You are the same guy who walked in the door of this building an hour ago. Your diagnosis changes nothing about who you are and what you do." I have not started any meds due to the pending DAT test, but if needed, I am leaning toward Azilect. I look forward to your thoughts. Thanks for letting me sound off....Will
  9. OK me again five doses into trial of Carbidopa Levodopa to determine if I am officially a PWP or somthing else: last few days in my personal observation of my symptoms I have noticed that yes I have on days and off days/times which I know is normal for PWP... I also have seen I times where my tremor may be worse but my joints aren't as rigid or painful, or My joints will be killing me, but the tremor is not as apparent, and then of course I have times where both seem unbearable (for lack of a better word). Is alternating which symptom is more intense something other PWP have experienced? Or perhaps is this a sign that my symptoms are not related to PD? This is such a diverse illness that neither answer would surprise me. I apologize for all the questions I find information helps me cope with things, and perhaps I am still searching for another opening to feed my denial. Also forgot to mention, seems like alcohol calms my tremor during use but aggravates rigidity especially next day, and exercise/ activity makes my tremor worse but seems to help rigidity... Thanks Richard
  10. Read Dr. Okun's article on ultrasound for tremor and maybe one day Parkinson's disease in the New England Journal of Medicine Journal Watch Neurology (full version) or on the blog at Parkinsonsecrets.com
  11. I recently had my teeth cleaned, and the hygienist suggested using nitrous oxide gas, instead of the Zanax my PCP had given me, to reduce my tremors during the experience. The NO gas worked great! Not only was I very much more relaxed, but the constant tremor in my entire right arm actually stopped for ~ 1 hour. What a relief it was just to get a break from the tremor, and enjoy the mild euphoria of the gas. So, question: I'm guessing that NO gas effects dopamine, however I've found that anything that increases my dopamine also tends to cause dyskinesias in my neck & shoulder. Yet, with the NO gas, there were no dyskinesias, no arm tremor whatsoever, and a relaxed time was had by all. What is going on chemically that this works so well for me to experience a dramatic reduction in tremors, with no dyskinesias? The hygienist was so pleased with how much the tremor subsided, and how I enjoyed simply being relaxed that she commented she "wished she could send a bottle of it home with me." Is there a medication that mimics the effect of NO gas, without the side effects of it? Do other/ most PWP also experience a dramatic reduction in tremors from using NO gas? If so, why? If not, what could this reveal about my experience of PD & my personal body chemistry? Thanks for your answer.
  12. I am a 66 year old man diagnosed with tremor dominant PD. For the past few weeks, I have been taking Sinemet 25/100 2 tabs, 3x/day. So far, the medication does not seem to be effective in controlling my tremor, but it has helped lessen my distonia. My distonia consists of toe cramping that occurs whenever I am cycling (and only when cycling). My questions are: 1) Can Sinemet be taken on an add needed basis--only on days when I will be cycling? 2) If Sinemet is not effective on my tremor, would dopamine agonists be unlikely to help? Would a non-dopaminergic med such as Amantadine be worth a try?
  13. Does the Parkinson's resting tremor between thumb and forefinger involuntarily bring the thumb against the forefinger? I never quite understood this as it doesn't seem like people generally ever have their hands in a position where their thumbs rest against their index fingers. Thanks!