I was asked to be more full in my reporting on mannitol and B1 so here goes.
I was dx 4 years ago aged 53, the symptom that took me to docs was stiff hand and losing ability to write. I have always had a difficult shoulder so had assumed thats why hand not responding. My thyroid has gone wrong some 6 years earlier and i was some 30+ lb overweight making exercise and running which i had always done impossible.
I sold my house, left my job in Care and moved to rural France from england. One of my sons came with me the others stayed in UK- a hard decision for me. By the time move was finalised i had lost my excess weight- i dont know how, lost the weight but gained PD 🙄
I had refused levo meds as felt not needed but i had started on Azilect about 6 month after dx.
I added mannitol from syncolein.com in Jan 2018. I have logged my dosages and complaints to monitor the progress and i have found it vital - reading it back now i think wow, really. You must keep a note and video yourself- hard viewing but neccessary.
Before mannitol i had acute painful headaches, bladder urgency, very stiff, terrible apathy couldnt care if i died or not, no finger tap, trigger fingers, some cramps, inability to bend toes, mood flips real rage but quick to subside.
Within 4 days felt happy had an intrest in things- r arm started to work(stirring things etc). Hand helping me to dress puling clothes on. Much more energy not collapsed on sofa in eve. Fluttery mouth recovered. Mental improvements continuedfelt i could understand things brain fog lifted. Sometimes think the physical improves follow a mental improvement- improvements are obvious bit of a wow movement- e.g look at that.
Start B1 as Dr C recommended. 10/6 at 1500mg am and lunch- running well with arm swing and straight back no stooping. By 4/7 o/d (overdosing) cant walk up hill with dog, real sweats dripping in sweat, hand not moving terrible cramps r foot. Trouble getting out of car leaning on frame to get up. Dr C says stop 1 week restart 1500 mg am only. Restart 16/7- feel energised, cramps gone. 8/8 o/d agin feet sticking. Stop till 13/8 nd restart on 1g a day. Alot of foot sticking again not much improvements here apart from one day when i got in swim pool and my swimming came back (before dx i used to swim a mile a week front crawl but since dx i couldnt manage a length of pool without stopping). This is what made me persevere i knew it would and could work it was just dose.
I then took a longer break of 2 weeks and restarted low at 500 mg a day with intention of going up to find optimum dose. 12/9 restart at 500 mg on first day my back relaxed- 2 days later body much looser started working in garden. On 20th had a good swim- no coaching of arm. Added 100 mg and added another 100 2 days later, hands working well folding towelsetc. O/d took 2 days off. Restarted at 500 mg. Dr C suggested i add sinimet as they work in synergy. Took me 4 months to get neuro appt and added long release modopar to regime.
I had spent the in between 4 months pushing B1 up o/d and stopping etc. But in the times it worked it was fab just felt bit like a rubber band in so much as once too overwound felt like i snap. When o/d was awful, my legs would stick my knees shake and was falling often. I did not want this kind of future. In my last chat with Dr C and after sent a new video he said i had lost my poker face and this he could see when i still was struggling with doseage.
Now my regime is azilect 1mg a day, mannitol 1 tbsp a day, B1 powder approx 170mg a day- rubbed into my gums, Modopar slow release 125 twicw a day.
Maybe feel sometimes that some symptoms were forced out by B1 when o/d. But now my sense of smell returned, cramps gone, finger trigger only there am till B1 taken, stabby random pains gone, headaches gone, need for nap gone, poker face gone, rigid back gone, apathy gone, fluttery mouth mumbled speech gone, loss of power/strnegth gone, collapsing knees gone, feet sticking on 3rd step gone. Getting stuck in shops and just wanting to get home feeling unsafe and scared to be out.
Now i run (a bit) swim in summer, take yoga classes weekly, split logs in winter, tend my acre big garden, walk dog twice a day minimum of 2 miles each walk, have had our first foster dog, driving is returned to safe pre PD dx standards, able to wash my own hair, relaxed in body enough to static dance- balance is still off. Have done2 nd yoga/hiking retreat. I feel better than have for many years probably from before thyroid issues 2009
Only issue i have with meds now is that i beleive modopar dose is too high as i often awake alot in middle of night and if i drop 2 nd dose i get good night sleep. A work in progress.
Stress is important to control too- if i get anxious etc then i can freeze up so deep breathing cures that- relaxation. If i get to turn / move around too fast then i could fall- have not for months now used to be weekly.
Sorry if this too long and rambly but tried to show how up and down it can be.
My advice i suppose is log your progress, start slow and increase gradually, i found the longer breaks to de-tox were better than shorter to really get it out ofsystem.
I feel strong energised supple and flexible not PD words.
Has anyone been able to reduce their C/L dose once they started on High Dose Therapy B-1? If so, how and why did you decide to reduce C/L? 
Which supplements?? Your top 5
Should he increase C/L dosage?
Why would different brands of mannitol affect me differently?
Results of the recent survey 
