[Kirk]

The current forum software is much inferior to the previous, rather so-so software. There’s too much clutter in the user interface, big chunks of the screen are used for lists of members and statistics and other trivia, yet the important section of the screen, the one for reading articles, is starved for space and not arranged for scanning or even reading.

It is not an easy to use, inviting, engaging experience.

[Kirk]

Hi Ron –

You might want to try searching on google for “myths about levodopa”, paying particular attention to credible sites such as universities, research hospitals, and foundations such as the Michael J Fox Foundation, the APDA, and the like.

I was diagnosed last year at age 63 and my neurologist advised me to start on carbidopa/levadopa, three tablets of 25-100 per day. He started me on a half dose the first week to get my body used to C/L and I haven’t had any problems. I’m feeling much better these days.

Look into exercise. There have been some controlled trials in the past few years that indicate vigorous exercise slows down the progress of Parkinson’s. Search for “Parkinson’s SPARX” or “Parkinson’s Park-in-Shape” for details of the trials.

Think cardio at 80-85% of your maximum heart rate for half an hour, several times a week. I work out daily (probably overkill) on an elliptical trainer and also take brisk walks for a couple of miles. I use an Apple Watch to measure my heartbeat. If you are sedentary now, you will want to be careful to build up to this level gradually.

My personal approach is to take my C/L, exercise like a fiend, and hope that the current research efforts pay off soon.

[Kirk]

You may want to look into compression stockings, either prescription or over the counter. Two members of my immediate family (neither with Parkinson’s) have reported major relief from nighttime leg cramps after wearing the stockings during the day.

 

[Kirk]

Your inability to raise your arms over your head sounds like frozen shoulder, a condition my wife (not a PwP) had which was resolved through surgery and lots of physical therapy.  You likely have more than one thing going on.  PD is not the source of all our ailments.

 

[Kirk]

Hi C Morts –

If I were you, I’d go back to my doctor and ask what else they have. There are other drugs out there besides C/L and its sibling Rytary that are used to treat PD. They may work better for you.

Kirk

 

[Kirk]

Ron –

From the MJFF website, the page titled “Ask the MD: Myths about Levodopa”, the bullet point “Levodopa loses effectiveness over time”:

“After taking levodopa for some time, it certainly may feel like the drug is less effective. Often, higher and/or more frequent doses are required to control symptoms. However, this is mostly due to gradual worsening of the underlying disease rather than medication’s effects diminishing. As long as you take it, levodopa will remain beneficial. But, if the natural progression of your disease requires higher levodopa doses, side effects — including dyskinesia (irregular, involuntary, uncontrolled movement) — can occur. This may lead to a dose reduction, which, in turn, may limit some of the drug’s benefit on symptoms, such as tremor. (Note that some individuals may not tolerate a dose reduction, preferring dyskinesia to other symptoms.)”

My advice is to read much from the reliable websites. And skip google’s summary stuff; it’s not helpful. Read the actual pages. Maybe even buy some books on Amazon and read them. After a while you’ll see a consensus and get some understanding of the spectrum of issues. Remember that everyone’s course through Parkinson’s will be different; you are not destined to have every symptom or side-effect or progression. The thing that gives me hope is the vigorous exercise approach. I suspect/hope I can delay further symptoms long enough for the medical approaches to improve, either stopping progression or perhaps something close to a cure. At the very least I’ll be much healthier 🙂