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06-02-2016, 07:05 AM | #11 | ||
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Junior Member
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The problem is that I am not the patient, and my husband's relatives are from the school that teaches, "Never disagree with the doctor and always follow the doctor's advice." They forget that doctors can make mistakes. They don't want to see that my husband is struggling physically, mentally and emotionally to cope with the effects of his treatment. I say, if he is suffering, if he can't function on these doses, this must be acknowledged, no matter that others prefer to believe that all is well. My husband's neurologist is available by email. After dose increase #2, I waited 3 weeks, much longer than I wanted to, before informing him of the side effects. I needed to be very sure that the increase was not working well, before reporting the problems, since he is inclined to listen to my husband's relatives and not to me. He waited nearly a week before emailing me back. He did not recommend any action; he only asked to see my husband at the next available appointment in 8 days' time. |
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06-02-2016, 08:15 AM | #12 | ||
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Magnate
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i suggest you consolidate all the detail you have presented here into a question to dr. okun. the more detail the better.
Ask The Doctor - |
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"Thanks for this!" says: | Bergamotte (06-02-2016), stevem53 (06-02-2016) |
06-02-2016, 12:02 PM | #13 | |||
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Senior Member
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The DBS mystery has the DBS team that did my surgery at Beth Israel in Boston at a loss for why the leads implanted in my brain, are treating my symptoms with the stimulator batteries off..If it lasts, it will be a blessing..The MRI that they are going to do at the hospital tomorrow, might provide an answer..The care, the surgery and the communication at that hospital is the best I've ever had..Very accommodating, and when I call there and ask to speak to the Dr, he always returns your call at his first possible convenience
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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"Thanks for this!" says: | johnt (06-03-2016) |
06-02-2016, 08:24 PM | #14 | ||
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Member
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Bergamotte said: "he is inclined to listen to my husband's relatives and not to me"
I'm having trouble getting my head around this one! My wife accompanies me to my MDS neuro appointments, but I just can't imagine any of my relatives coming too. The neuro always asks my wife for her view on how I am. I'll tell you about my experience, on the off chance that it might be of some interest to you, or to someone else. My neuro thought my tremor could be improved by increasing my dosage of Madopar 125 from 3 tablets per day to 4.5 tablets per day. When I tried the new dosage I experienced dystonic dyskinesia in my right foot (it started about half an hour after I took the new dose, and lasted for about one hour). I reduced the dosage back to 3 tablets per day but the dyskinesia still occurred. I then changed to taking half a tablet 6 times a day, and the dyskinesia stopped occurring. Rather than take the next logical step and increase the dosage to three quarters of a tablet 6 times a day, I instead took up high-cadence cycling [1] and that has reduced my tremor significantly. Taking a dose 6 times per day may seem bothersome, but so far it has been a breeze. We've set up an alarm on the screen-phone to go off at 2.5 hour intervals starting at 8am. When I am out and about I wear a bum bag containing a small bottle of water and some half tablets. I'm also lucky in that, at this stage, when I eat doesn't seem to have any noticeable effect on the medication. I can also miss a dose by half an hour (or even one hour) and, at this stage, this also seems to have no noticeable effect. [1] "Pedaling for Parkinson's..." thread. |
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"Thanks for this!" says: | Bergamotte (06-03-2016), billybiffboffo (06-02-2016) |
06-03-2016, 04:39 AM | #15 | ||
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Junior Member
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stevem53, you know that your body "is" a battery with its own electrical system, don't you? For example, your heart beats because of electrical impulses in a node. Your cells are bathed in, and contain, electrolytes. The implanted electrodes may already have what they need for a tiny current to flow along the leads, without any electricity being supplied from outside ... it's great! I'm going to be so interested to hear the official explanation for this phenomenon, but I think it's something like what I've explained above. We could say that you have an "endogenous DBS battery".
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"Thanks for this!" says: | johnt (06-03-2016) |
06-03-2016, 04:43 AM | #16 | ||
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Junior Member
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jeffreyn, I did suggest early on to the neurologist to try half-doses twice as often, and he said he didn't think it would help my husband at all ... I may gather my courage and suggest it again. Thank you for this tip!
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06-03-2016, 05:20 AM | #17 | ||
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Senior Member
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Following on from what Bergamotte wrote, perhaps the lead of stevem53's DBS is working as an aerial, picking up stray electromagnetic radiation. To test this, do you notice any difference as you move to electrically quieter areas?
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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06-03-2016, 06:22 AM | #18 | ||
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Junior Member
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Many years ago, in a time when many people had mercury fillings in their teeth, a man complained that his large dental filling was acting as a receiver; he was hearing radio transmissions through it. Poor man, he couldn't even choose what station to listen to! So I can believe your aerial theory, John.
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06-03-2016, 07:52 PM | #19 | ||
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Member
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Nigel |
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"Thanks for this!" says: | stevem53 (06-03-2016) |
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