Have someone a natural alternative to mitigate the off periods on PD?

[marnegro]

I have PD for 12 years. I have been in different drugs since then (mirapex,amantadine,neuropropatch,artane, ropirinole,neurontin,selegiline,bupropion, sinemet) sometimes three or more of them at same time in addition to natural supplements. By 2017 year end I had to quit most drugs because side effects were causing me more trouble than the PD itself. I am just in C/L 50/200 ER 1 pill three times a day and 2 mucuna 300ml pill (Swanson pharmaceutical) three times a day. I’m about 4 1/2 mo ago of receiving a stem cell treatment with umbilical cord cells (Wharton’s Jelly). I had some relieve but not to the extent I expected although I’m about 30% on less meds than before the treatment. The clinic keep me up to wait after 6 months of the procedure to let cells mature and that some PD patients had improved the most between 6 to 12 months past infusion. I’m left arm tremor dominant but most my struggle is with shuffling and freezing in the off period that last between 1 to 1 1/2 hours between doses. I’m doing really well in the On’s. I feel miserable to get stuck in the middle of a door or in a narrow space in public or shuffling while walking with my wife. I’m 54 yr old. Sometimes I got desperate and would like to ask my DR to prescribe me everything to make me feel well but my past is experience on med side effects stop me. I’m on daily excersice since day one on PD, I’m fit, I eat most clean, organic, veggies as possible. B-1 make me feel worst. I have stopped and restarted thiamin several times at different dose and always same reaction. Any ideas or suggestions for natural options may help to mitigate the off periods? Thanks

[Enidah]

I am holding out hope for the inhaler type of device for use in off times that is coming down the pike, we hope. It is in the last stage of testing. There is also one other that I'm sure other people know more about than me... because I can't remember what it is. Did you ever try Entacapon, generic for Comtan? It is used to prolong the effectiveness of the sinemet. I was given a prescription for it. I am already taking sinemet and amantadine and hate to add a third med, but I will give it a go and see if it helps.

Sorry I haven't done better answering your actual question. The only thing I can come up with is exercise which sometimes will give me longer periods between meds.

[Enidah in reply to Enidah]

I realized after I wrote that that often exercise makes me need more Sinemet, not less. Dang!

[marnegro in reply to Enidah]

Enidah, thanks for your reply. Have you started Comtan? It works? I was prescribed that one time but I never picked up at pharmacy..... I just decided to keep struggling by myself that time but now may be I'm inclined to try....

[Enidah in reply to marnegro]

I started taking the Comtan today so I'll let you know how it's working. I'm starting on a small dose, half a pill just twice a day instead of a full pill four times a day. I don't know that I will up the dose unless I need to. I also want to keep an eye out for side effects. I did notice that I had an extra hour of being on after I took it this morning.

[PDGal4 in reply to Enidah]

I take 1/2 C/L, chewing it or let it dissolve in my mouth, between doses when I feel an off period coming on, with my doctor's approval.

[Astra7]

Have you looked into mannitol and NAC? Also worth trying aspirin or nurofen as I think they help a bit.

Did the B1 make you feel anxious? I am trying it but only 200mg to 309mg a day as it makes me tremble inside and not sleep.

[rhyspeace12]

My husband was helped a great deal by his new motion specialist , going on Rytary 2 capsules every four hours, and one capsule at bedtime. It has cut way down on his off times. He no longer takes any of the other Parkinson's drugs like Azilect.

Rytary is expensive, but I found an organization that gives it to him free.

[JohnPepper]

You have tried many ways to overcome your Pd. All of them cost you a lot of money. If you really want to overcome your Pd you should try fast walking. Not only does it cost nothing it improves your overall health and you don't need any medication, once you have done it for long enough.

I took an MAOb inhibitor together with the fast walking and after only 8 years I was able to stop taking the mdication and I have lived a normal life since 2002.

If you really want to get better then look at my website - reverseparkinsons.net and contact me. IT COSTS NOTHING AND THERE ARE NO CATCHES!