My Neuro wanted me to start cl at one half tablet per day for 3 months until I get used to it. Now I know that is not enough. Appointment not till Friday. Could you call me please . painful to type. **thanks

3.5 years dx but realize I have had PD for a least 20 or more years. My Neuro started me on c/l at one half tablet per day 25/100 for 3 months. I raised to 3 a day recently. My appointment is next Friday. I think I have enough c/ l untill then. I realize now that dosage worth help. Can hear from you made it up. And others please

Maybe your dose is too low. Have you considered Deep Brain Stimulation (DBS). It's helped thousands of folks with PD!

Hi Blackfeather,
Make it a habit to not ever run so low on anti parkinson medication that its likely that you'll have to go without.
Whether through not having your prescription filled at the pharmacy or like now not even having any more scripts for the pharmacist.
We're a bit like type 1 diabetics in that respect just as they need insulin on hand we need levodopa.
Even if we just slip down to the shops nearby for an hour (been there done that...flat tyre!)
You have to keep spare tablets with you.
Did the dystonia go when you titrated the levodopa up Blackfeather?
If you've nearly run out try ringing your neurologists rooms and explaining to staff about your dilemma with dystonia from P.D. and they should get him/her to write a script today.
If they sound like idiots who either couldn't be bothered let them know you can't wait till friday..be firm you need it now!
You've left your next visit to neuro far too long.
Get someone to run around for you today and make sure by the end of today you have enough levodopa in you and on you that you can stop counting how many you have left!
I no longer get dystonia as I had DBS 13 yrs ago.
It was definitely the most distressing aspect of living with PD. and relieved by increased dosage of levodopa.
As i said previously titrate up slowly.
Also looked at your previous posts in one of which you wrote you had M.S.A.
If you do have a firm diagnosis of that then I'm sorry but your response to anti P.D. drugs won't be as effective.
Let me know how you go.

Blackfeather, have you been diagnosed with MSA, or with PD? Answers to your questions would probably be quite different for each of those. I don't know enough about MSA to say anything about that.

But if you do have PD, does your dystonia improve or worsen after taking C/L? In my case, I have tremor dominant PD and the dystonia was clearly worse, not better, after taking C/L. It was caused by the meds, not by PD. Meds actually did me more harm than good, though later in the disease they did help with low energy, so we had to try to find a balance. My neuro says that current thinking is that 60-80% of those who are tremor dominant do not improve with any of the meds. Also, I would agree with Zanpar : DBS has greatly improved my dystonia, so that would be worth checking out. Just keep in mind that we are all different, but there is hope. Best of luck.

Made It Up,
Great member name by the way...Just wondering how the road has been with DBS after 13 years...Is it still a solid alternative after that period of time. Any thoughts would be appreciated. Thanks,

Eric

Hi Eric,
I'd been formally diagnosed with PD 24 yrs ago at the age of 35.
After I had DBS my PD symptoms had just about disappeared.
Apart from gait problems which I'd not had much of prior to DBS I could then and still do today when seated (I might be kidding myself here!) pass for someone who doesn't look Parkinsonian.
My voice is a bit quiet, my face relatively animated and I've had no further dyskinesia or dystonia which were very disturbing before DBS.
As mentioned previously to Blackfeather no more dystonia...well maybe a little in my toes now but nothing like previously.
No more dyskinesia I was practically bouncing off the walls when on before DBS!
I acquired a spinal cord injury which along with the propulsion issues DBS has left me with a fairly awful balance and gait and so use a walking frame.
I'm a huge fan of DBS Eric and very grateful for it.

Made It Up,
Thanks for the info. Very happy for you that DBS has been such a relief and great option. It's comforting to know that in some cases it can be a medium/longer term solution for us. My toe dystonia drives me crazy and I try toe separators and tighter socks to get some relief with a little success....Anyway, thanks again and feel good.

Eric

ed,
something to consider about DBS is that with more and more acceptance of it and aging population, might be much longer waiting lists and higher out of pocket costs? so at the minimum, even if you want to put it off, at least get all the info you can especially where you would want to have it done.

DBS was always on the back burner, i thought the "cure" would be developed by now after 13 years since diagnosis. now i'm taking up to 200mg C/L every 2 hours, it's a long story but i woke up 1 morning a lot worse and i want a DBS, it's a no brainer. but it's obvious i waited too long. my point is, even if your're not mentally/physically ready for DBS, it never hurts to keep tabs on what's happening in R&D and who has the best record so if the need comes on suddenly, that you aren't in a panic to just "get in line" wherever you can and can attempt to get the best neurosurgeon/organization.

Soccer,
Great advice to stay in touch with DBS research and options as it could sneak up on someone like me even as I am not at that point yet. I definitely don't want to be in a panic situation as I already experience anxiety thinking about the future with this useless disease. I hope you can get it done somehow, even though you say you waited too long. Somehow, make it happen. Also, thanks for being the outspoken skeptic on this site when someone is pushing something in a self serving manner. I'm sure others here appreciate it as well.

Eric