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Old 02-27-2014, 12:11 PM
ashleyk ashleyk is offline
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Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
ashleyk ashleyk is offline
Member
 
Join Date: Oct 2006
Location: New England
Posts: 262
15 yr Member
Default 12 years into PD

Hello,
I am posting for my wife who has had PD and was dx'd 12 years ago. All previous posts were made by me, John, and not Ashleyk. Going back, reading this thread on DXM or LDN, is a sad letdown on the hope I had for these opioids. I became a believer in these drugs especially after reading the NIH research papers by Dr. Hong et-al. Assuming that the LDN my wife was getting from Skip's Pharmacy for 8 years was real, I can say that her PD has progressed to the point where she needs a lot of attention and is probably at a stage in the disease that is typical for her type of PD. She faithfully took the capsules every night but stopped maybe 2-3 years ago believing she was progressing. I tried to get her to try DXM but she couldn't wouldn't do it. My recomendation would be to forget about LDN and try DXM 1/2 tsp.
Her condition now is poor. She is fragile, having lost 30 lbs, along with severe osteoporosis, 3 fractured vertebrae from many falls, very forgetful and now having hallucinations at times. She is not good at taking her meds. She is taking about 8x 100mg of Stalevol, maybe 2x levoc-dopa 100mg and 1x Neupro patch 4mg daily. She has a lot of off time, little good time and dyskinesia which effects her mind and is scary. I have asked her docs to hospitalize her for PD so someone can figure out a better treatment but I guess that won't happen until she goes to the ER. She will see a new neurologist in 2 weeks who I hope will send her to a PD specialist at Brigham and Woman's Hospital in Boston. I am very frustrated with everything especially the failure of everyone/anyone to come up with a much better treatment than L-dopa.
John
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