My husband started Mannitol about five months ago. He has had PD since 2006, and the past 2 years has suspected dementia. He has stiffness, postural instability, gait issues, but no tremor. As a result of Mannitol, he no longer needs his Dopamine meds.
Here is his current daily regime:
20mg numenda
150mg Effexor
1 probiotic
1 tsp mannitol (bulksupplements) in Diet Coke
1 mag citrate (bedtime)
Prior to Mannitol he was taking:
4 mg Neupro patch
3 Rytary 23.75-95
20 mg numenda
150 mg Effexor
1 cap miralax
1 probiotic
1g thiamine
1 mag citrate (bedtime)
Getting the dosing right has been very challenging over the past months as he goes into a psychotic state with slight changes to his dopamine levels. The whole process was gradual, where after 2 months, he clearly needed only half a Neupro patch for awhile and then he only needed one daily Rytary for a few weeks. And the only way to know he had too much was by his anxiety levels and hallucinations. (I wouldn’t recommend going through this alone.) The breakthrough came at the first of this year when I realized that even 1 Rytary in a week was causing anxiety and hallucinations and he stopped it completely. He is now functioning as well as he did last summer when he was on all the meds. Stopping the meds prior to mannitol BTW would have left him completely immobile, stiff and stuttering.
There are very clear improvements in a couple of areas:
He’s having regular bowel movements for the first time in years
He can sleep a solid 6 hours without waking at all. This is huge as he often would wake every hour through the night.
Both eyes stay open now when he wants them to. One eye was closing all the time prior to mannitol.
He is awake and energetic more hours of the day.
His mood is better.
His balance is improved, but thiamine also did that for him.
He is trying to learn how to use things again like cell phones and remote controls. He made toast for himself the other day! It’s not all sticking yet, but he can operate his lift chair by himself again, sometimes.
I have all my fingers and toes crossed that he will see more improvement over time, especially with his speech (he keeps flipping back to his first language and I can’t get him to speak English sometimes) and cognitive function (exec function, spatial awareness, etc).
We’re in a much better place with at least a glimmer of hope again, thanks to everyone on this site who shared their experiences and especially Gwendolinej who recommend mannitol for him specifically!