I have only mentioned Mannitol when replying to a number of members posts, but I thought I should share our story generally.
My husband was diagnosed with Lewy Body Dementia in 2012. Levadopa appeared to do nothing for him. At this stage his main symptom was severe apathy...misdiagnosed as depression and then LBD. Our first success was when one of the neurologists at the Movement Disorder Clinic he was attending suggested the Neupro Patch. After a few weeks, he was off the bed and functioning, with a new diagnosis of PD.
All was well in that area (non motor) until about 18 months ago, when the apathy reappeared. (We now see one of the neurologists from the Movement Disorder Clinic privately, although he likes us to attend the Clinic periodically, to get a second opinion ). He was starting to think dementia again.
My husband was put on Xadago, with only a slight improvement. At that time, we also tried the B1 protocol, with the neurologist’s approval. Unfortunately, the high dose sent his blood pressure thru the ceiling. He’s now taking 250mg. (We may increase it slowly at some stage).
After reading about Mannitol on this site and following the link to the Israeli research, and then asking our wonderful pharmacist to double check it, we sourced it and my husband started on the recommended dose in January this year.
Mannitol generally is known as a diabetic sweetener.
Within days he started to improve mentally. (At that stage, he was on the bed nearly all day).
He was off the bed, his dizziness and fogginess in the morning disappeared. He started reading the newspapers, chatting and discussing current affairs. Before the lockdown, we went to our friends’ house for dinner, where he chatted all night, till quite late. (We hadn’t been out together with friends for a long time. He wasn’t up to it). He’s now doing crosswords and even 1000 piece jigsaws.
As he is no longer dizzy or foggy, he is able to go to PD exercise classes locally twice a week. He is also using his little peddle bike 4 times a day x 15 minutes each...two with his legs and two on the table with his arms.
Physically, he is still very unstable on his feet. He doesn’t have a tremor. It’s hard to measure any improvement, as we are not out and about because of covid19. His posture is certainly better and his facial mask has almost disappeared.
We are still hoping for more improvements. (Other members say it took longer to see results, but they didn’t have the apathy problem). He has lost to a great extent his sense of taste. We are still hoping in that regard.
When we visited the neurologist a few months ago (before covid19), he was amazed at what he saw. A few days later, he sent us information from the International Parkinson and Movement Disorder Society, on a large trial now taking place. Till then, he had no knowledge of Mannitol.
The fact that it’s been used since at least the 1960’s for brain surgery and brain injuries in major hospitals seems to have slipped below the radar. No research had been done since then because, I guess, there’s no money in it for the pharmaceutical companies. To see the history of this current research see the Syncolein website.
Syncolein has produced a product specifically for PD. I have sourced mannitol from a supplier here in Australia who brings it into Australia from Europe as a sweetener for the manufacture of diabetic foods. It’s very cheap. Initially, I ordered it from Amazon, to discover it was coming out of China. Fortunately it didn’t arrive.
I hope our story helps others and gives them hope that there are lots of alternatives that may work with or without the current PD medications.
Besides this site, the other important fact is that we have a good team of medical professionals around us. Our neurologist is very caring and doesn’t think he knows everything. We can ring him anytime. We also have a great GP and pharmacist.