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09-14-2018, 05:46 PM | #1 | ||
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I was dx with PD 15 years ago at the age of 43. For the first 15 years I was only on Mirapex and Artane, both considered "agonist" drugs. I added Carbidopa/Levidopa about 5 years ago.
I'm seriously considering DBS, but before I do, I want to seriously look into all aspects of that surgery. The example I give is this ... Before ordering something from Amazon, I read the one star comments first. In other words, I want to know people's BAD experiences and what COULD go wrong. It's easy to concentrate on only the positive comments ... but I find I'm much more informed if I research the bad comments as well. I sincerely appreciate any and all comments. Thanks ...
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Terri People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Quoted by: Maya Angelou (Reader's Digest Oct. 2006) |
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"Thanks for this!" says: | eds195 (09-17-2018) |
09-15-2018, 12:35 PM | #2 | ||
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Well, maybe this is a good sign ... no one has posted anything negative!
If anyone else has had DBS and is happy with the results, can you share that with me as well? Amy information and insight you can provide would be appreciated.
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Terri People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Quoted by: Maya Angelou (Reader's Digest Oct. 2006) |
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"Thanks for this!" says: | eds195 (09-17-2018) |
09-16-2018, 11:18 PM | #3 | ||
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The surgery is completed in such a short period of time and there is so much emphasis on that part. If you read the info carefully, you will find that it may take six months or more to get a good stimulator and meds combination. If you have other specific questions. I'll give it a go. |
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"Thanks for this!" says: | eds195 (09-17-2018) |
09-17-2018, 01:50 PM | #4 | ||
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09-17-2018, 03:08 PM | #5 | ||
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After 20 years of Parkinsons, my husband had a DBS right before Christmas, 2017. This is his 9th month after surgery, with 6 appointments for programming. Would we do it again...…...YES! Does it have some drawbacks? Yes. One thing we noticed was a change in his speech. His volume is much softer, he tends to speak faster, the longer the sentence, and when that happens, he stutters (not always, but some). Speech was not a problem before the surgery. He has started the Lee Silverman speech therapy program. He has lost about 75% of his tremors, and his medications have also been reduced somewhat. Granted, he is so much better without the tremors and all the meds he had before the DBS. But something I believe everyone should guard against is the expectations that they will return to the physical abilities they had before they started a decline. You can be so much better, but you will not be "cured".
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Jo Ann |
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"Thanks for this!" says: | eds195 (09-19-2018) |
09-18-2018, 09:59 AM | #6 | ||
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"Thanks for this!" says: | eds195 (09-19-2018) |
09-18-2018, 12:00 PM | #7 | ||
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My husband's DBS was done on both sides, so I guess he had twice the likelihood of having a speech problem!
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Jo Ann |
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09-18-2018, 12:57 PM | #8 | ||
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I'm hopeful that present 5 studies ongoing now on reducing alpha synuclien will come up with a drug that will stop and even reverse PD. Georgetown Univ seems to be very knowledgeable in this and Prothena seems to be on a good track. I believe they are presently doing Phase II studies. Can't wait to see what they find out.
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09-18-2018, 05:37 PM | #9 | ||
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All of these comments have been extremely helpful. In just those few posts I have gained a tremendous amount of knowledge.
One more question, however. Originally my tremor is what was most irritating. Now my tremor is pretty much under control but when I'm "off" , my stiffness is unbelievably debilitating. And I'm not using the word "debilitating" lightly! Does anyone know if the surgery helps mostly those with a tremor and/or is it equally effective for those with stiffness?
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Terri People will forget what you said, people will forget what you did, but people will never forget how you made them feel. Quoted by: Maya Angelou (Reader's Digest Oct. 2006) |
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09-19-2018, 03:58 AM | #10 | ||
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Senior Member
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proudest_mama,
Levodopa is normally effective at reducing stiffness. Before going down the DBS road, it seems sensible to me to spend some time optimising your drug regimen. If that doesn't work, DBS makes sense - but, what type? John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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