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Bren128

Bradykinisia in fingers?

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Just curious as to how many of you have slowness in the fingers. Im on amantadine and it helps somewhat but my fingers are still pretty slow. No medicine I have been on has really improved my fingers too much, which sucks for typing!

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My fingers in affected left side are responding pretty well to Mirapex ER. I play the fiddle and it has made a wonderful difference in my ability to hit the right strings at the right time. Before this I tried Amantadine until the side effects were worse than the relief. Each of us is different in how meds affect us.

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My fingers in affected left side are responding pretty well to Mirapex ER. I play the fiddle and it has made a wonderful difference in my ability to hit the right strings at the right time. Before this I tried Amantadine until the side effects were worse than the relief. Each of us is different in how meds affect us.

 

Wow you can play the fiddle? I can barely type ! Im going to mention Mirapex to my doctor. Thanks!

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Hi, While we are on the subject of fingers (and hands) does anyone have pain. I have this mysterious pain in the last joint of my middle finger that comes and goes but when it comes it is very intense. I also have pain in my hands (more on my affected side) that comes and goes. My hands have been x-rayed and all the joints and bones are fine.

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Before starting Mirapex I had stabbing pains in my toes and fingers with no apparent cause. And now I have had none for 3 months. I can't tell you that Mirapex ER will work for everyone who tries it but it has been a miracle for me. Consider that this is my 7th different PD drug in 2 years. I tried Sinemet twice ( 2 different manufacturers) and twice had immediate negative reactions. Ropinirole wore off and became ineffective and Amantadine, which worked great for four months, suddenly gave me nasty reactions.I just got my Azilect increased to 1 mg again so I have more than my fingers crossed that I can maintain this wonderful state. My fingers on my left hand now function with the same flexibility and dexterity as my right, allowing me that pleasure of escaping into my fiddling. Music is the best medication I have ever tried!

Back to the meds..... Has anyone else experienced immediate negative reaction to Sinemet? Mine was strong jerking in my tongue, so bad I couldn't talk, and in my left foot, so bad I had to wear a brace. My foot and hand on affected side developed red,painful lumps on them and became stiff and inflexible. My neurologist, one of the best in the US, said that he had never seen that reaction in any other PD patient to Sinemet. There has to be at least one out there?

 

 

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I had no response to Sinemet at all, took it for 2 weeks. On the nuero patch now and it hasn't helped either, but this only the fourth day. Makes me tired though.I WISH my fingers on my left hand were even half as good as my right, im jealous ! But you all give me hope!

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Don't give up hope or trying to find help. Other than Mirapex ER, I get help from physical therapy/ physical fitness program at Terrio. They, like many other PT places, give those who are no longer taking therapy an opportunity to stay with the program for a modest monthly fee. One thing they taught me was to put my hand down on a firm surface and press down while extending my fingers. That helps. Moving my fingers to music also helps improve flexibility, like pretending I am playing an instrument to a tune from my iPod. The more I do that the less I think about PD and the more I stimulate production of those feel-good neuro transmitters. Life is now!

 

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Bren, if your symptoms do not respond to neither sinemet nor the dopamine agonists, it might be unlikely you have Parkinson's. (maybe some form of dystonia?). have a close follow up by your neurologist to determine if/when these drugs should be discontinued.

 

botox injections-for muscle rigidity- might also help, especially with your hand problems. have you discussed this with your neurologist ?

Edited by christie

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Bren, I tried Ropinirole, Amantadine, and two trials of Sinemet before getting a dopamine agonist that gave me back my flexibility. There are a lot of dopamine agonists. Keep trying to find one that works for you. For example, of the 30+ PDers in my support group, only 2 of us are taking Mirapex ER. Others are taking other combinations. Don't give up looking for the one that may work for you. I have been told by others that if Sinemet doesn't work for you, you don 't have PD. Not true. Each of us just responds differently. I sometimes wonder if Parkinson's Disease is 1 disease just many related variations. Frustrating, it is! Here I am at 2 am.....can't sleep but my fingers are moving....

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Hi, I am righthanded with right side parky rigidity. I realized that something was wrong when I couldn't use a screw driver and had trouble putting a key in my truck ignition switch. Mickie, amazing you can play violin. I agree though that the more you do, the more the symptom fades back. Exercise and making the old body move is worth a handful of pills. I have trouble typing. If I do a little workout with my compression spring hand excerciser, it gets the Neurons firing better. Mirapex did make my hand work better. I am on Levadopa now and have no side affects that I know of,

 

Defiant Fist to the sky, jb

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Thank you for sharing that with me. Actually, because I can't stand high pitch sounds, I play the viola.... A richer, more soothing sound for my ears. I have always wanted to play the fiddle and just picked it up the same time I was dx and I am grateful for every day I can play. My physical therapists keep me working at gaining strength and stamina so i can play better and longer jam sessions. There is a man in my support group who has trouble walking but won the salsa and cha-cha divisions in the International Ballroom Dance Contest in LA last year. And there is research that seems to prove that our achy, stiff, inflexible body parts function better to the sound of music. Music is my best pill and ....no negative side effects!

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I started playing ukulele when I was diagnosed a few months ago. I definitely experience stiffness and slowness in my left hand. Combine that with tremor and you've got some seriously avant garde riffs going on. I'm taking Requip XL, which seemed to help when I started, but seems to be losing effectiveness lately.

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Good for you...keep playing and let those crazy riffs happen. I have that automatic vibrato in my left hand that makes it sound like I know how to really play a fiddle, thanks to my PD tremor. Besides the fiddle, I also work with art media....polymer clay, metal, acrylics, etc. ...and spend a lot of time playing. And I push myself to do exercises to build stamina and to improve balance. Now, those three added together have to make my neurotransmitters sing, don't they? Tomorrow is my birthday and I intend to celebrate entering my 70th year of life by ignoring PD. The Present is the biggest present!

 

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Guys, Ive been on this patch for a week and a half (rotigotine), all it does is make me more tired. The Amantadine helps my fatigue ( Which is what it does for people who have MS), it also very slightly helps my bradykinisia in my fingers and loosens my arm somewhat. I also keep getting this numbness/tingling feeling in my back especially by the spine. Like a pinched nerve , its been going on for awhile and its getting worse. Sometimes painful. Any of you have this? I may mention mirapex to my doctor when I go on the 14th of March. This slowness of movement is killing me, if its this bad now how bad will it be in 5 .10.20 years?

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Your history with meds sounds much like mine and a year ago I was asking the same questions. Amantadine worked for about 3 months to alleviate neck and shoulder pain and then it created more problems than it solved. Last Fall I was so achy and slow i even thought about buying an electric scooter. Finding a medication that works is really trial by error it seems. Mirapex ER is working for me now. But.....for how long? That question has prompted me to work harder to find ways of improving on my own because neurologists and pharmacies can only do so much. Have you been prescribed physical therapy? I get 26 visits paid for by insurance, then my PT place lets me continue for the rest of the year as a physical training client for only $60/mo unlimited visits. Through their help and a lot of hard work I have improved every part of my PD body. A year ago, for example, I could not play my fiddle standing up and for only 20 minutes at that because my back hurt similar to what you describe. Thru PT I now can play at jam sessions for 3 hours straight -standing or sitting. Every concern I have had has been helped by other things than pills.

 

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Guys, Ive been on this patch for a week and a half (rotigotine), all it does is make me more tired. The Amantadine helps my fatigue ( Which is what it does for people who have MS), it also very slightly helps my bradykinisia in my fingers and loosens my arm somewhat.

 

amantadine is used to alleviate fatigue not only in MS but also in Parkinson's.

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I have been told by others that if Sinemet doesn't work for you, you don 't have PD. Not true. Each of us just responds differently.

 

I stongly think that most neurologists(if not all..) would agree that a patient with YOPD should respond to sinemet. Levodopa unresponsive parkinsonism is most likely NOT caused by PD, especially in young onset PD. A two weeks trial (as other members-including Dr Okun!- have previously emphasized) is NOT adequate to exclude the presence of levodopa responsive parkinsonism. In fact, most patients with long standing PD should wait for more than a month to see substantial benefit from levodopa.

 

The side effects related to any drug are irrelevant to the symptomatic benefit obtained. Meaning that a patient with YOPD may not tolerate a certain drug (dopamine agonist or levodopa) not because the drug doesn't work to alleviate symptoms-at least to some degree-, but because the side effects are troublesome.

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Christie, I agree with you that PD should respond to Sinemet, YOPD or not. It isn't that I didn't respond, and dx at age 67 not YOPD. I had an immediate negative reaction that lasted for over a month. Specifically, my lips felt numb, my tongue swelled and jerked non-stop so badly I could hardly talk; my foot pulled so hard I had to wear a brace. When I stopped the pill, the symptoms went away. The side effects were immediate, intolerable and happened each of the two times I tried Sinemet...2 different manufacturers At that. My neurologist, a movement disorder specialist at a noted PD facility, says that he has never in 23 yrs of practice had a patient have a strong negative, allergic type of reaction to Sinemet. And yes, I do have signs of an atypical Parkinsom Syndrome, but then so do half of the 30+PDers in my support group, many of whom take Sinemet well. Each of us is unique in our symptoms and in our reactions to meds it seems. But, you are right....I have yet to find another PDer who has had this same experience.

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I stongly think that most neurologists(if not all..) would agree that a patient with YOPD should respond to sinemet. Levodopa unresponsive parkinsonism is most likely NOT caused by PD, especially in young onset PD. A two weeks trial (as other members-including Dr Okun!- have previously emphasized) is NOT adequate to exclude the presence of levodopa responsive parkinsonism. In fact, most patients with long standing PD should wait for more than a month to see substantial benefit from levodopa.

 

The side effects related to any drug are irrelevant to the symptomatic benefit obtained. Meaning that a patient with YOPD may not tolerate a certain drug (dopamine agonist or levodopa) not because the drug doesn't work to alleviate symptoms-at least to some degree-, but because the side effects are troublesome.

 

This is why I'm sticking to this patch for as long as possible. I was told that if I had PD I should respond to it, but honestly It has done nothing for me. I feel way better without it but I want to keep trying so we can completely rule it out. So im sticking with it.

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Christie, I agree with you that PD should respond to Sinemet, YOPD or not. It isn't that I didn't respond, and dx at age 67 not YOPD. I had an immediate negative reaction that lasted for over a month. ................

 

But, you are right....I have yet to find another PDer who has had this same experience.

 

Thanks for clarifying this mickie! As you described, your symptoms responded to sinemet (as normally expected in a patient with PD), but unfortunately, you had some sort of negative (allergic?) reaction to it. this can happen to anyone with any drug. it's totally unpredictable, unique to each person, and irrelevant to the response or not of symptoms to the drug.

 

Our friend Bren, is a little confused, because he doesn't seem to respond to any dopaminergic drug (levodopa or dopamine agonists).

this argues against a diagnosis of parkinson's and could be great news of course. Bren, have you discussed with your neurologists the possibility of dystonia? dystonia is a little more problematic in regard to treatment, but is not a degenerative condition and its prognosis is much much better in comparison to parkinson's.

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Our paths may be different but the journey is the same. I wish you good fortune, Bren, as you pursue answers and solutions. In my family and group of friends, some have MS, spasmodic torticollis, epilepsy, and essential tremor and they share with you and me the frustration of illusive answers.

 

Live Now!

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