In good hands

As I’ve visited with the medics implementing the guidelines of the study, without exception, have seemed to me to be: caring, supportive, conscientious professionals, with prior paramedic &/or emergency trauma experience. One even maintains a job in Lady Lake, going on ambulance runs on the weekends.

I saw the Study Doctor again for a brief evaluation. Besides listening to my lungs he asked how things were going… and I reported I get hungry in the night. During the night, I had helped myself to four snacks. They will most likely be putting increased appetite as a ‘possible side effect.’ Which may not be a negative for me, since my last home scale reading was 105.

I do have to observe times for when I eat. Breakfast can’t be closer than 1/2 hour after dosing, And The evening meal has to happen at least 3 hours before the evening dose… so dinner at 5 to 5:30 prior to dosing at 8:30. It is no wonder I am hungry later… We haven’t been in the habit of eating our dinner before 8:30. BUT I think part of it also is the diet. When on Ketogenic diet, I didn’t get hungry. But, there is so much starchy foods and sugars here, I get full, but not satisfied.

Tonight, I held out half of my tuna sandwich and cherry pie in ziplock baggie, and put it in our room for when I wake up at midnight, 2:30 & 4:30 and can’t go back to sleep, till I eat something.

I may participate

I had a phone interview this morning. I passed the pre-qualifications and have an appointment tomorrow morning, at the clinic site in DeLand, to learn if I am accepted to participate in a study.

The study intrigues me, because …as I posted before, I have been taking an enzyme I found referenced to as beneficial in breaking down the build up of alpha-synuclein.

………………………….Serropeptase & Parkinson’s
12/29/18 Dr. Berg recommended … Serropeptase  3 x’s a day on empty stomach  suggesting enzyme may break down or dissolve build-up of protein (alpha synuclein) in the brain.

I found this additional insight on ‘MyParkinsonTeam.com’: “Now known as Lewy bodies, these deposits of alpha-synuclein (aS) protein are understood to be one of the most common causes of dementia in people with parkinsonism.”

…………….I expect they will require that I discontinue taking the enzyme, for the duration of the trial… but that is ok.

STUDY PURPOSE: The most urgent unmet medical need in Parkinson’s disease is a treatment targeting the underlying disease mechanism and thus prevent the disease from progressing rather than only controlling symptoms. The study drug tested in this study is a new chemical compound called UCB0599, which could have such effects by preventing the aggregation of alpha-synuclein in the brain, which is thought to be the main driver of the disease progression. This is strongly supported by studies in animals but it is still unknown if UCB0599 will provide real benefit to humans. The purpose of this study is to evaluate the safety, tolerability and pharmacokinetics of multiple doses of UCB0599. Pharmacokinetics means measuring the amount of the study drug in the blood and how long it stays in the body. For this purpose, Study Participants will be randomly (by chance) assigned to receive either the study drug or a placebo, both provides as capsules. A placebo is a “dummy” capsule without UCB0599. Participation in this research will require participants to stay in a clinic or trial unit for 30 days (28 days of treatment and 2 days for safety follow-up). The study drug differs from purely symptomatic drugs currently available and may improve the medical care of patients who do not respond to, or cannot tolerate current drug treatments for Parkinson’s disease. The drug also has the potential to have a positive effect on a much broader range of symptoms of PD, including non-motor ones (like cognitive issues). The study is expected to provide critical safety and PK data required for a larger study to test if the drug works in PD patients.”

I will send updates to confirm if I am accepted.