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

sorry about your wife and thanks for sharing.

John-
Sincere wishes and prayers for you. It is so heartbreaking to see hopes dashed. I have been getting glimpses of the future myself from time to time and don't like it a damn bit. One of the things that we don't like to do is to dredge into the archives of the oldtimers such as PIENO going back 20 years or so and realizing that those people said much the same things as we do or did. Sobering.

I am not going to hold out false hope for you. Sometimes even kindness is cruel. I just checked and the cupboard is low on things that may help particularly once the polypharms begin their dance. The cupboard may be low but there is always a place at the table. We share what we have.
-Rick