[Gerald McCarty]

On my last bought with constipation, my step daughter nurse recommended drinking a Crapachino. It’s warm prune juice with a bit of butter. The taste is not too bad. It took 2 to get things moving, but it worked in the end, so to speak.

[Gerald McCarty]

I was put on Encatapone a while back when my time between C/L doses was down to 4 hours, around the clock. After 2 weeks on the newly added medication, I was having severe orthostatic hypotension. After trying to contact my neurologist and getting no response, I switched to a new neurologist and was quickly switched to Rytary, which my old neurologist rejected as an option. My orthostatic hypotension went away and I am doing better than I had been for the previous 6 months. I take Rytary every 5 hours except at night when I take 2 C/L ER tablets that get me through until my 5am morning Rytary dose.

[Gerald McCarty]

I’m in south Texas and the heat has really messed with me this summer. I don’t remember having issues with the cooler weather the past winter. I plan to go north next summer just to survive.

[Gerald McCarty]

I had already planned to retire from my IT job at age 62 and had given my 5 year notice long before my PD diagnosis.  I put up with minor symptoms until after I retired in late 2019 and saw a neurologist early in 2020.  After playing a lot my first year of not working, I volunteered as a janitor for my church the next year.  As things got worse I fully retired after 15 months.  I now generally stay close to home except to fast walk on the treadmill at the Y 3-4 times per week.  I miss not having freedom to do whatever I want due to medication scheduling.

[Gerald McCarty]

I had to decrease the time between doses and add continuous release tablets before bedtime.

When will research give us a way to measure our Levadopa blood levels like diabetics measure their blood sugar?

 

[Gerald McCarty]

I would love to see a chart or spreadsheet of current clinical trials to include in what is phase the study plus what aspect of PD the pharmaceutical or therapeutic is targeting.

There is so much information available but it’s difficult to keep track of so many studies and trials.

If there is already a central repository for this information, please share that.

 

Thanks in advance,

Gerald

[Gerald McCarty]

I recently (~4 months ago) added ground flax seed (~1 Tbsp) to my overnight oats and constipation disappeared.  I’ve actually been able to cut back to using it every other day.

Good luck,

Jerry

[Gerald McCarty]

I don’t take melatonin (yet) but I can take my last dose of C/L at 4pm and don’t take my next dose until 6am the ext morning.  I can’t go that long during the day.  My usual time between doses is 5 hours.  I may need to try melatonin.

[Gerald McCarty]

I tried the Bened product and quit after 2 weeks of stomach upset.

[Gerald McCarty]

Julian,

I am scheduled to start taking the 50/200 CR at night along with my 5 daily doses of 2 tablets (25/100).  How many 50/200 are you taking before bed and what’s your daytime schedule?

My current daily schedule has been 2 tablets 25/100 every 4 hours.  How many hours should I get from the 50/200 tablet?

I am aware my results may vary.

TIA,

Gerald

[Gerald McCarty]

I like the idea of getting melatonin from food rather than taking another tablet.  I will try the pistachios with a bit of “no sugar added” ice cream.

Thanks for the suggestion.

[Gerald McCarty]

I was originally diagnosed in 2018 but resisted taking any meds.  After my tremors got worse and I finally got a new PCP, I also got a new neurologist at my former workplace (a med school) and he put me on low dose of Sinemet and gave me the power to adjust my dose as needed.  My tremors are mostly under control and my sleep has improved.  Prunes have been a weapon against constipation that I really enjoy more than I thought I would.