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| This is Terry Hayes the Iowa study coordinator. |
The EKG Test (Electrocardiogram) is done the first thing during the screening visit, that is why I am showing it first. It is the probably the most invasive thing they do, and I mistakenly wore a sundress that pulled over my head (because it was so hot outside and in)! What you wear does make a difference, and I came to subsequent appointments wearing jeans, a T-shirt, and a front clasping bra. Also during the first visit, I underwent many other types of tests and scans, mostly for the brain (PET scan, MRI, and many tests of the blood that they do each month. They also weigh me each time so they can adjust the amount of infusion as needed.
One important fact remains: there is no rushing in research, and we spent most of the summer waiting to hear about my admission into the study! It really took weeks from the screening visit to actually schedule a first appointment.
One important fact remains: there is no rushing in research, and we spent most of the summer waiting to hear about my admission into the study! It really took weeks from the screening visit to actually schedule a first appointment.
After I started the study, there would be monthly visits for a year and a half, where I would receive monthly infusions of the study drug (or placebo). The infusion is in the arm, and takes about an hour and twenty minutes each. They also monitor your blood pressure and pulse several times during the infusion. At the completion of the infusion, they take a vial of blood out of the opposite arm, just to make sure nothing is going wrong. Last week, I had the fifth visit, and things are going very well. We will never know whether I am on the placebo or study drug, but I am feeling pretty good!
Besides having scans and infusions, there are also a variety of brain tests that I carry out each time, including the type of test that have become familiar through the PREDICT HD study that we did, and some new kinds of mechanical assessments that detect motions in the hands or feet. I have met a couple of other study participants there, and they feel that they feeling an improvement in their reactions to things.
Besides having scans and infusions, there are also a variety of brain tests that I carry out each time, including the type of test that have become familiar through the PREDICT HD study that we did, and some new kinds of mechanical assessments that detect motions in the hands or feet. I have met a couple of other study participants there, and they feel that they feeling an improvement in their reactions to things.
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| This is me getting the monthly infusion in my right arm. |
