Anyone NOT taking any meds?

[Joealt]

[Chalkie]

Hi Joealt,

I am currently not taking any meds specifically for my PD.

I live in the UK, DX'd about 4 years ago - I WAS on meds but found the side effects worse than the condition so I stopped last April despite dire warnings from the Neurologist and PD nurse that stopping would put me straight in hospital! - didn't happen.

Thanks to the OCD effects of Ropinirole I will now be deeply in debt for the rest of my life though!

I certainly feel no worse off the meds and realise I was getting very limited, if any, benefit from them except for a lessening of tremor - I much prefer to accept the tremor than the drug side effects!

Keep well,

Nick

[PatV]

Good for you. I'd love to try a med vacation. The doc told me to stay undermedicated. But I'm scared to go without right now.

[srarndt]

Not med free, but the other day i went for a DBS adjustment and as soon as they turned me off, my body went CRAZY! Then they turned me back on, and life was good all of a sudden! I have, however, since my DBS been able to cut my meds in half from 8 sinemet per day down to 4. And the drug side effects almost totally disappeared.

[JanellenGrimaldi]

I am not on meds. I tried a drug called Mirapex briefly, but it made me very sick. I was officially diagnosed in 2009. Tremor in right hand and foot. I still remain very mobile. I walk and dance, etc., and am a violist and a singer/entertainer. I prefer to stay off meds. The awful side -effects are worse than the disease. There are ways of coping with the tremor. People I know who are on some of these meds still shake, and have ugly side effects as well.

[Susie01]

I would be scared to death to go off my meds! I was soooo sick prior to diagnosis, I would not want to go back there again. Within a few days of starting azilect my tremors were less and my mind had started to clear.

I was already stage II at diagnosis, it was not just tremors, I could not walk without falling, severe nausea and vomiting, visual hallucinations, uncontrollable movements in my left arm, etc. I have had a less severe "episode" while on medication, I was under extreem stress at the time of the subsequent episode.

[Cerelia]

I was diagnosed 10 years ago and put off taking medication for 2 or 3 years. Then I took Ropinerole, which made me very sleepy, so it was changed to Mirapexin. After several more years I was finding everything difficult, and started on Sinemet, which has made a world of difference. It has been gradually increased, now 4 per day, plus Mirapexin. The only side effect was occasional dyskinesia, which seemed to concern professionals more than myself, so Amantadine was added., one a day, and so far the dyskinesia has gone. But I know it is likely to return at some point. Everyone is affected differently, I don't think the progress of Parkinson's is affected by any medication, but when it works, the release from symptoms, even for a short time, makes it worth taking. I certainly couldn't manage without medication, and if I could only have one, it would have to be Sinemet Plus, but I have great symathy for people who have side effects worse than Parkinson's itself.

[scottyt]

1.5 lowest dosage Sinemet twice a day supplemented by Hash oil and speed walking and Pilates...

[Nyrhtak]

I don't. I stick my feet up a wall and count 100 then go back to bed!