Placebo or the Real deal

I have been baffled, because not every one in the study has the same restrictions on eating.

Where as I am not to eat for three hours prior to a dosing or half an hour after I take the pill, another test subject is required to go eleven hours without food and only eats twice a day.

Although we arrived for the study on the same day, they told him he had to wait an extra day to begin his dosing, because his medication hadn’t arrived from Belgium until then. (Weird)

{ I just noticed the rule: i before e, except after c doesn’t apply to the word weird…} (Weird)

Anyway, the study partner with the med from Europe (I’ll call him ‘E’) has been experiencing phenomenal improvements i.e. reductions in his symptoms.

  • When ‘E’ arrived, he used a cane, due to instability. soon he no longer felt a need for a cane, but he was still shuffling his feet. This morning, as I watched ‘E’walk down the hallway back to his room, ‘E’ was picking up his feet… an obvious confident walk with no shoe sliding!
  • It was ‘E’ who pointed out to me, that he could now snap his fingers. (When I tried snapping my fingers today, I could with one hand, barely.. but not the other… typical ups & downs of PD)
  • ‘E’ reports he his speech & articulation are much improved.
  • ‘E’ reports only a slight tremor in one hand remains.
  • ‘E’ was excited this morning, to report he hadn’t drooled for the last two nights, as noted by the fact the sleeve of his sleeping attire had remained dry

As I visited with ‘E’ this morning, as we discussed the differences in our protocol, he suggested how I might determine if I was receiving the placebo. He said he didn’t swallow the capsule (cheeked it) then he allowed the capsule to dissolve in his mouth. Once was enough. His expectation was that if it was a sugar pill, it would be sweet. ‘E’ said what hit his taste buds was not sweet. Cautioning me to have water close, to wash the pill on down after it dissolved because what he had tasted horrible!

Naturally, I had to try it for myself. First off, it was not sweet… but it was nearly flavorless, but it did have a slight aftertaste. So… am I getting the placebo? or does ‘E’ have more keen taste? Do I have the test med, at a much lower dose? I’ll probably never know.

But what I do know, is there is something coming down the research pipeline that I hope will be available to turn back the symptoms… hopefully in the not too distant future.

React with gratitude

The staff at the study site are doing their best… When I toured the facility, I asked if there was to be any exercise equipment, since an exercise regiem is considered to be the #1 most proactive thing Parkys should have. The medic said, “I understand they hae been ordered, but haven’t arrived yet.”

After my big data collecting day had passed, I asked, “Where is the exercise equipment.” After inquiring, the medic came to say, “There was a change in plans, and they have contracted with ..” “…. from an exercise gym, and they are supposed to have someone here tomorrow, to work with us in a group exercise class. They were a no show. 3rd time should be the charm, right? When they called to find out what happened? “… the person assigned just left on vacation… they will be here when they return.” REALLY?

I have been standing between two dorm beds. doing squats & leg lifts [ok,,a couple times] Then another study participant took matters in his own hands, saying he would like to organize a stretching exercise class. Today, I accepted an invitation to go out onto the patio for some stretching exercises to the accompanyment of ‘Oldies’ music.

After 12 minutes of exercise, he had us take three laps around the perimeter of the patio. This is where I stepped up, stating they should Swing their arms, while striding. Then, after swinging a little to music, our leader began to snap his fingers, demonstrating his RETURNED skill. Stating he hadn’t been able to snap previous to the start of the study.

Primarily this is done by building tension between the thumb and another (middle, index, or ring) finger and then moving the other finger forcefully downward so it hits the palm of the same hand at a high speed

I’m pleased to report I also have noted improvements. I wrote an address for John yesterday and he commented, “That is the most readable thing you have written for quite a while.” And knowing I had previously been unable to snap my fingers, I was delighted when I also could snap my fingers.. with both hands! This action precipitated conversation, with people telling me my face is more animated than when I arrived, and I smile.

Our exercise leader confided that one of the medics said they had seen a lot of improvement in him over the past week. I’m thinking it has been multiple strokes of good fortune that I learned of this study, that I was accepted to participate and I’m thinking did NOT receive the placebo.

There is the story of the alcoholic father with two sons. One follows in his father’s footsteps and ends up struggling through life as a drunk, and the other becomes a successful, sober businessman. Each are asked: “Why are you the way you are?” The answer for both is the same: “Well, it’s because my father was an alcoholic.” The same event, the same childhood, two different outcomes. This is true for almost all situations — what happens to us is an objective reality, how we respond is a subjective choice. The Stoics would say that we don’t control what happens to us, all we control are our thoughts and reactions to what happens to us. Remember that: You’re defined in this life not by your good luck or your bad luck, but your reaction to those strokes of fortune.

My reaction? Be grateful, not just in my heart, but EXPRESS GRATITUDE!