So it's Keeler not Keller

[painter777]

Thank You to the Mods for allowing this post.
This will end this Off Topic Posting by me in the Carbine Forum.

I'd like to add to anyone forced to care for a loved one via todays health portals and zoom calls to document everything by printing off portal instructions and recording zoom calls.
I can't stress this enough. At first I did this to help me keep track of everything going on but found it to be valuable 'Proof' of errors on the part of the her medical team.

Recorded and printed records showed when the 'Health Professionals' made changes in medicines, dosages or dosage schedules then later asked why she was taking med A @ every 3hrs instead of every 4hrs. I could show when they made the change (s). I was surprised how often they had no record of making the changes or referred to it even though most of the portal messages read like a forum or text message when all you'd have to do is scroll upward to a previous date where you could find that discussion. Zoom calls are different, they rely on their notes. If not physically documented, they had no record.

I kept a 24hr daily log on all her medicines/strength/time.... including over the counter.
Another log on her food intake and daily weight.
Another log about my observations, especially noting when a new or increased dosage was introduced.

You hit a stonewall when your not the 'patient' just the spouse. They want to talk to the patient. Late 2021 my Wife had been approached by her Neurologist of 13 years to enter a Clinical Drug Study group he was going to do, she declined. Things were going fine for her until this same Neurologists office increased her Sinemet (early June 2022) and added a new to her med called Ongentys 50mg capsule 1x a day. We were told and our research showed that Ongentys works like a Helper to Sinemet's main ingredients: levodopa and carbidopa, easing the wearing off period and symptoms before the next dose is due. First red flag was our Pharmacist and Family DR telling us they'd never heard of it so not familiar with it. Next was getting approval from our insurance because of the very high cost of it. All the while we thought since my Wife had been under some heavy stress from a loss in the family was more Parkinson's meds required? I wanted to hold off she wanted to try it. I was concerned because you couldn't find much online about Ongentys as far as Study Group results in the US. This was when I found it had only received FDA approval in early 2020.
After 7 days of use nearly every severe side effect listed and then some were happening. I have it in my log. My next dozen Portal messages were asking repeatedly How do you get off of Ongentys? Countless phone calls with no return calls. Neither Family Dr or Pharmacist had any idea how to wean off from it. I actually called the FDA Hotline and they recommended reducing to the Ongentys 25mg capsule. The FDA contacted her Neurologist whose office made a appointment for 3 months later. In the mean time we pulled some strings and got in to the University of Michigan for the testing which revealed the toxic levels of Sinemet ( levodopa and carbidopa) . That combined with the Ongentys which extends the life of the Sinemet resulted in the Severe Side Effects from both drugs. Like a horror show coming to your home.

1: I believe she was part of a 'Clinical Study' that she was unaware of.

To Surpmil, More correct than you'll ever know, Thank You
2: iatrogenic causes