T or F--lower dose of C/L means you can take it longer?

True or False? In the past I remember reading these 2 things:

1) The later you can delay treatment with C/L drugs, the longer you can take them as you age, and

2) Keep the dose as low as possible for as long as possible, this will stretch out the amount of time before you plateau on the meds.

This doesn't make sense to me. My spouse is 73 and started taking meds a year ago. He was on a very low dose--at first splitting a 25/250 C/L in 1/4ths! at a rate of 3x daily. This would be 62.5 my of Levodopa. It did practically nothing, but he thought that doing it this way meant he would have a long, long span of time when he could use the C/L. Then, at my insistence, he increased the dose to 1/2 tablet--125 mg of L, 3x a day. That worked quite well for 9 months, no tremors, no balance issues, clear head. But then the positive affects wore off and the symptoms got bad again. Now he has increased to 250 mg L first time in the morning, and 125 mg 2 more times a day. It is working great for balance at 250 mg, but still has tremors, which of course get worse later in the day with the 125 mg dose of L. Clear headedness totally disappears with the 125mg dose, only the 250mg can give clear thinking.

He refuses to try an increase to 250 mg later in the day, and by noontime he is fuzzy and not alert. He says he can keep ramping up all the meds now, and burn out quickly, or stretch the increase in doses, little by little, over a longer period of time, years and years, so he can still take the meds when he is 80 or 85. My opinion is that his quality of life isn't great now, why not enjoy it with a higher dose now, and not wait until he is 85 and unlikely to appreciate it anyway? Plus, I thought that "burning out early/plateau" concept had been disproven?

Any thoughts?

[johntPM]

False.

The latest evidence is that you should take as much levodopa as is needed now, but no more.

See, for instance:

michaeljfox.org/news/levodo...

But, dyskinesia is linked to ups and downs in levodopa levels. So, it makes sense to have more, smaller doses per day. I take 5 per day. Also try to avoid eating protein close to a dose as this competes with levodopa to be absorbed.

[GymBag]

I believe that several studies have shown that it is not necessary nor recommended to suffer now from insufficient medication to try and per-long your treatment in the future. That was very old school. There is also no advantage to take too much. His Neurologist will probably have the best recommendation as he progress with input from you. Taking the medication will allow him to exercise and attain much benefit and help avoid things like arthritis by keeping the joints moving by exercise. It is his big opportunity, and he is missing it. I am also 72, taking meds for 15 years ,lots of room left for more.

[Hidden in reply to GymBag]

Thank you both! This is so important and it makes me incredibly sad to see my once vibrant, active spouse now feeble and frail due to misinformation that can be easily corrected, and his quality of life vastly improved. Most days he won't leave the house due to tremors and balance, or he will do so only the first few hours of the morning, when he has taken his highest dose of 250mg. After that he shuts down--which I now know could be avoided by increasing his dose and/or augmenting with another med.

My husband refuses to see a doctor, after having received the diagnosis last year, as we live in a place where he can get the C/L over the counter, no prescription. And he is covered by Medicare, so no reason to not return to the US for a full battery of tests. But that's another topic altogether.

[GymBag in reply to Hidden]

Time to consider the possibility that dementia may be involved.

[lenamm]

I got horrible life stopping dyskinesia in two years most of that on 200mg a day. So no - I stayed low and still got dyskinesia in two years.

[Kevin51]

Look up pedaling for parkinsons; riding a stationary spin bike avoids a lot of balance concerns and high intensity workouts improve cognition etc. I find cycling much easier than walking. Find some route to exercise. It is not optional for PwPs!

[Hidden in reply to Kevin51]

Thanks--I am trying SO hard to get him to take interest in recovery. Many things have come easily for him up until now and I believe that because he has never had to work super hard for anything--what for the average person would have required immense effort came naturally to him--that he is not accustomed to challenges like this. Thus, he thinks that "popping a pill" should make everything better, and if not, then, that's the way it goes.

He's not depressed and I don't believe he is apathetic. I think he is lazy, and fearful and anxious, which puts him in denial, as he can't talk or think his way out of this situation, as he has done in the past (as a trial lawyer!).

My family relative who is a few years older than my spouse does all sorts of exercise every day and has joined support groups, etc. and I see such a difference between the two family members. I think I will start another topic on this.

[GymBag in reply to Hidden]

That might have been a Froidian slip or you are misinformed , either way.

There is no recovery