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Gwendoline Jakins became a registered member
5 Comments-
hi gwendoline
it seems as though australia is light years ahead of USA in terms of treating PD. i am on neupro, doesnt seem to be doing much for me..interesting you have access to xadago as it is not covered by medicare here and many insurance companies do not cover it. if they do, it is still cost prohibitive.we all react very differently to treatment, i dont think we will ever be normal again, we just need to accept our new normal…
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My husband was on 8mg patch. Started on 4mg. Xadago is not readily available here. It’s being trialed (4th trial) in the US and elsewhere. Our neuro could give it to 10 patients. This trial is to get feedback that is not from a control group. My husband did improve on the Xadago, but still has some apathy, but at least he’d reading a newspaper and taking a interest in the cricket. The neuro thinks that maybe he has dementia, but I’m not prepared to accept that at this stage, as that’s what he was first diagnosed with….LBD. IM IN THERE FIGHTING. B1 seems to work for a lot of people. But getting the dose right is difficult. I went too fast and my husband’s blood pressure went thru the ceiling. We have started again slowly. He’s also taking B6, B12 and magnesium. And I’m picking up some Mannitol today, which should help restore his sense of taste and smell. What a roller coaster we are on.
I have a friend in my bridge class with PD. She is amazing. After a chance meeting with John Pepper (Google John Pepper Parkinson’s) here in Australia, she followed his protocol and wow…her walking is great. She’s now driven…does line dancing, rock n roll, walking to music. Even when she’s feeling “crap” she pushes her way thru it. She’ about to do the “Voice” course. Certainly there’s no apathy there. If we could get rid of my husbands apathy, he’d bethere with her.-
xadago was approved by FDA in 2017. B1 didnt work for me, i do take b12 and magnesium, beware too much b6 as it may effect efficacy of carbidopa/levodopa if your husband is taking that. i read john pepper’s book, he seemed to relate walking and selegeline as the thing that helped him most.
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Yes, you’re right, Xadago is available here as well. But they are doing a phase 4 trial to get feed back on its effects. I guess where the 10 patients comes in. Our neurologist will report back on its effects. He is very involved in research and very open minded. I will watch the B6. Thanks. Gwendoline
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that is great you have a neuro who stays on top of things. plz do keep us informed as to xadago effects,
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