Hi, I'm new here, 74 and was told I had PD about two months ago. Having been 'soldering on' (Specialist term) for a long time already I was given Madopar 50mg/12.5 Hard Capsules straight away but have yet to take any. What I'd really like to know is:
1) do these pills actually keep us from dying sooner than we might otherwise have done so or do they simply make life more comfortable during the time we've got left?
2) Anyone here trying it without pills?
3) Is there any aspect in particular that usually takes us out?

Hi, welcome.

The pills will not make anyone live longer, just improve the quality of life on a day to day basis by lessening the symptoms.

However by being generally better at moving about and coping, the patient is less likely to trip or fall, or suffer from illnesses like pneumonia.

Ray.

Hi
I was diagnosed 3 months ago, and like you currently have my doubts about medications, so I'm currently not taking any, apart from supplements.
I'm hoping the cogane trial will start in the next 6 months and will volunteer for that.
I had the feeling after seeing 2 consultants that it was medicine by numbers, with the side effects balancing the benefits. However that's easy to say until my symptoms worsen, so I will have to decide as I go.
Looking at sites where people have been on meds for years, a lot are trying to reduce them to get rid of the side effects. On neurotalk there's a lot about mucuna pruriens which will be my start point if and when I have to.

Everyone is unique, so I guess it is horses for courses : )

Thanks guys. Good luck to you Ray; and you krugen68. Let's keep in touch to compare results over time.
Capella

If you have doubts about starting on the drugs then the symptoms are obviously still quite mild. Everybody's PD is different, so is the age of onset and (therefore) the survival rate. Be under no illusion, however, that putting off taking drugs prolongs this.Generally the survival rate is much better than before there were any drugs for PD. And the quality of life, thanks to the drugs, has certainly improved for everybody. The difficulty with Mucuna Pruriens as I understand it, is the accuracy of the dose and the fact that it is Levodopa without carbidopa/benserazide. It is a pity research is not more concentrated on this(probably no profits...)natural form of Levodopa, as initial research was encouraging.

Hi,
I personally was trying to hold off taking meds for as long as possible,but soon realised that a better quality of life passes you by whilst you struggle on unnecessarily.I don't regret starting because i would be so down,struggling and in more pain if i haden't,plus i was at risk of having an accident in the car due to my driving being affected.Everyone has the choice of if and when and when the time is right,deep in your heart you will know.
All the best
Titan

Do not kid yourself as although it is a herb, mucuna pruriens is still a drug.It may be better than any of the sythetic drugs:that I do not know.It is still a drug,as is Digoxin used in medication for the heart,which is extracted from foxgloves. Just because they are herbs that does not mean they are less potent or harmless. If you take mucana you cannot, in all honesty, say that you are managing without resort to medication.

Hi all

1st posting to forum, I am 48 and was diagnoised 3year ago, but suffered and still an suffering chronic pain since 40, so much for life begins at 40.
Currently taking Half Sinemet 12.5mg prob about 8 to 10 daily, was using Prolonged-Release CR (slow release) but unable to get them because of manafacturing problem. For pain I take Pregablin 100mg, I go to Hyperbaric oxygen
chamber 3 to 4 times a week which helps with circulation and pain.

Anyone else is excrusiating pain?

I will finish there for now, look forward to any comments or ?

helenp

You make a good point, ECD. I hear quite a few people say they would like to try mucuna pruriens believing that they could reduce their dependence on drugs, and reduce their side effects. However, I think it is simply a natural form of a drug. Being natural may or may not offer benefits compared with manufactured drugs, but it still counts as a drug in my book, and I guess will have similar side effects in the long term.
On the question of when to start taking drugs, I used to think that putting off taking drugs for, say, three years meant that you would postpone by three years the time the side effects of the drugs became debilitating, so in effect bought you time. But now I'm not sure. My consultant seems to believe that it's best to stay one step ahead of PD, and not allow the symptoms to become "embedded" so to speak. It may well be that once the body learns a "trick" like freezing before a doorway it becomes very hard to "unlearn" it and reverse things. This is mainly conjecture on my part, but may fit my own experience.
What do others think?

I agree because I think one has the problem of expectations.If one expects something to happen then this is half way towards happening.This must be related to the placebo effect,which is paricularly strong,so it is said, in PWP