Running report

No, I’m not running away. And, actually, I haven’t been getting any exercise. I am just trying to create a continuing dialogue, to share my experience during the study.

They administer 1 dose, every 12 hours… 1/2 hr prior to breakfast & in the evening… so I have taken five capsules so far.

The process provides us with plenty of down time. After the Spinal tap and first day of blood draws, I have five days to rest. Day 6 is multiple blood draws, finger pricks and EKG. And if I understand correctly, there are another five days of rest, followed by another day of multiple blood draws, finger pricks and EKG. with the pattern following until the day of the second spinal tap which is expected to go very similar to the first day… except I trust the spinal tap will go more quickly. I haven’t asked if there is a weaning off of the meds period, but I know the last day, I’ll be meds free… but remain here just for observation. They are really cautious.

Yesterday, when I was transitioning from one room to another, the kitchen help saw me stumble/stagger and panicked.  She talked to a tech and they said they were going to recommend I use a cane.  Mind you… I have never fallen.  Then, when the Main study doctor was doing a neurological exam on/with me today, he volunteered the opinion.  As the medication builds up in my body, I should see a lessening of symptoms… so he opted to take a wait and see attitude.