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03-24-2016, 06:18 AM | #21 | ||
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"Thanks for this!" says: | soccertese (03-24-2016) |
03-24-2016, 12:29 PM | #22 | ||
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Junior Member
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Being a pragmatic person, I wasn't going to wait for the "cure" or wait til DBS was not going to be an option anymore. My tremors got to the point where they affected my QOL. The process takes time and the surgery was looking at a fall slot. My wonderful Dr. got me in earlier. For insurance you need solid documentation from a reputable doctor. Call insurance co. beforehand to verify coverage. First you take a lot of cognitive tests. Then you take an off on test to check how meds are affecting you. Then you will have either 1 or 2 surgeries (I prefer 2). My 1st one was the hardest as you are unmedicated and awake for the brain's electrodes. That will be harder for those with dystonia or dyskenesia. I have neither. I waited for my tremors to be on both sides to go bilateral and not to have go through this again. The 2nd one was to insert the wire and generator. This part you go under. I had no complications. In 2 weks I go for my turn on day. I was dx at 51 and I am in my 10th year. |
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"Thanks for this!" says: | eds195 (03-24-2016), soccertese (03-24-2016) |
03-24-2016, 04:05 PM | #23 | ||
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Member
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Have any of you heard about the pump for Parkinson's? it was approved by the FDA in January of this year. It is carbidopa/levodopa in a gel form which is administered through a PEG-J tube,very similar to a feeding tube. No more taking pills by mouth, is absorbed right into your bloodstream. I am currently on the pump now. I still have pills just in case something happens with the pump.
The medication is expensive but there are many organizations like the one I applied to and got a grant to cover the cost of medication that insurance would not cover. I urge you to look into this. Today for example I have been on my pump all day long and have not had any dyskinesia, rigidity or other symptoms and have not taken any pills. Quote:
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"Thanks for this!" says: | soccertese (03-24-2016) |
05-11-2016, 12:25 AM | #24 | ||
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Hi. I am new to this site - I was diagnosed in July of 2014 with stiffness in my right arm/hand. My neurologist immediately prescribed 1 mg of Azilect and 6 mg of ropinerole-- neither of which has helped. I am now reading about the side effects and all around toxicity of Azilect- my bad for waiting this long to consider alternatives. Ie mucuna, ashwagandha,lion's mane etc... Any thoughts? How long do you need to be off Azilect before trying alternatives?
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05-11-2016, 02:06 PM | #25 | ||
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Magnate
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http://forum.parkinson.org/index.php...ect#entry41697 and you haven't tried carbidopa/levodopa (C/L)? if that doesn't help i doubt mucuna will help. azilect doesn't do much for symptom relief and your dose of ropinerole is low but more power to you in your pursuit of alt-treatments. i would though see how C/L works if you haven't, if it doesn't maybe you don't have pd. that's all i gotta say. |
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"Thanks for this!" says: | Niggs (05-14-2016) |
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