How much is enough

[gbb4692]

Newly diagnosed with PD. How much carbi/levo can I take to combat the tremors

[Hidden]

enter Dr Fahn on this site search

[park_bear]

However much works well for you.. Do be aware that for most PWP, time-release versions work better than immediate release versions.

[JohnPepper]

Medication only temporarily hides tremors, if at all. There is nothing out there that can cure Pd or any of its symptoms.

All I can suggest is that you get as fit and strong as you can and reverse as many symptoms as possible to actually improve your quality of life. Get used to the tremor and accept that is part of your life.

Look at my website - reverseparkinsons.net - and see what I have been able to do to overcome many of my symptoms and live medication-free since 2002.

[Grumpy77 in reply to JohnPepper]

@JohnPepper "Get used to the tremor and accept that is part of your life." Wrong

What's the point when you stop fighting the most disturbing, destructive and traumatic symptom you have (for me at least). You can as well give up everything.

Nah. For me, I'll continue the search, the fight, trying herbs, exercise, thiamine. ... till I overcome this devastating symptom. As I stated in the other thread tremors is setting me back and I need to win this battle

[Springfield78 in reply to Grumpy77]

I am with you! Keep up the search!

[Bailey_Texas in reply to Grumpy77]

Forgive john he is old. He has posted the following

"Medication only temporarily hides tremors, if at all. There is nothing out there that can cure Pd or any of its symptoms.Medication only temporarily hides tremors, if at all. There is nothing out there that can cure Pd or any of its symptoms" for years. He believe if you just fast walk all your symptoms will disappear. For some reason he thinks you can control all your Pd with just your mind.

[JohnPepper in reply to Bailey_Texas]

I might be old but I am physically very fit.Can you walk 7 kilometres in an hour. My symptoms stay in chick if I keep up the walking. If I stop the walking it would not take more than 6 week for them to start coming back. Is 3 hours a week too much to put in to stay free of most of the movement symptoms?

[JohnPepper in reply to Grumpy77]

I agree that resting tremor is disturbing, but many Pd patients I know just accept it and get on with their lives. I don't think it is destructive., but I don't have it. As Dr Chris Hageseth how he has managed to live with a quite severe resting tremor. He counts himself as fit and free of most of his symptoms. He leads a good life, even though he has that tremor

[Grumpy77 in reply to JohnPepper]

Since you don't have tremors you can't understand it. Maybe your Dr and other people who call it resting tremor - a name which wrongly disguises it as if it appear only when you're at rest - have misled you.

Tremor springs out when it senses even very minimal stress (and everyone with tremor dominant pd knows this). When normal Stress which comes to everyone during public talking, interviews, business meetings, even social gatherings etc. hits you, then you begin to visibly jerk with tremor, and people just look at you like you're a nerve reck.... and it also severely stresses me up physically even when I'm tremoring on my own at home

At the moment for me, if I don't tremor under stress (or rest) anymore my pd is gone. All other symptoms (including stiffness) I experience is minimal and I can live with it. So telling tremor pd to get used to the symptom that is most troublesome to many, indicates to me that you do not understand this at all.

There's absolutely NOTHING WRONG WITH THAT. No one can understand everything in other people's situation

What's wrong is... instead of asking and learning about the symtoms you are not experiencing, you naively and ignorantly trivialise a thing (symptom) that is a big deal and a big problem to others.

If you don't think you're trivialising it then tell every PwP to learn to live with their symptoms whatever it is

No one that I know with tremor pd beyond the early stages (particularly when they are relatively young) can cope with it

[JohnPepper in reply to Grumpy77]

My apologies to you for sounding as if I am trivializing the tremors. I still suffer from tremors, but only when I am stressed. You are correct, when I am shaking I am a real mess and can do nothing about it. However, I am a strong believer that we can all do something to manage stress by trying to get rid of the cases of our stress. It is invariably caused by other people, and in particular, family. That makes it very difficult. When any family member stresses me I speak to them and tell them what it is doing to me and hopefully sort it out at that point, but that does not always happen. I have had to distance myself from certain members of my family as a result. That was very difficult. When you accept that continuing to be stressed will hasten your death, and nobody wants that to happen, then separation is preferable.

[Hidden]

You should be guided by your movement consultant as to the amount of medication needed in your situation. We are all different in what will be best for us. If you are able to exercising se vigorously as Mr Pepper suggests then it may help you. Having said that, if you have any other underlying medical conditions, you should take advice about the amount of exercise that is good and safe for you.

[swva]

Normally at least 300 mg of levodopa per day. I have been taking C/L for around 3 years and take 800 per day. Increase the dosage very slowly until you get relief.

[Kwinholt]

Everyone’s journey is different. I am a 55 year old female ultra runner and was diagnosed with PD at 49. I am very active and take 6 cd/ld 25/100 a day. If doing long runs I need more. Also take an azilect in the morning and Comtan with afternoon doses. I receive Botox every 3-4 months in my left leg to help with dystonia. Don’t be afraid to break pills in half if you feel you need more or less at times. See what works best for you. I am also a big advocate for vitamins as well . Take care.