SIGNAL SCREENING VISIT - Visit one and beyond

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. 

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.

This is me getting the monthly infusion in my right arm.

Hidden No More

Vatican City, May 19, 2017 / 03:24 pm (CNA/EWTN News).- Pope Francis’ gathering this week with a group of Huntington’s disease patients was a major inspiration for those seeking to increase awareness and research about the condition.“In the U.S. this is HD Awareness Month, so we're working on just telling the story of families affected by Huntington’s disease, and this brings it to a whole different platform,” said Louise Vetter, CEO of the Huntington’s Disease Society of America. “Really, with Pope Francis setting the tone I think it offers so much hope and inspiration," 

In an interview about the event, Charles Sabine stressed that, more than any other disease, people keep Huntington's Disease hidden, and that has prevented a cure or effective treatment from being found! There are so many negative aspects of "coming out of the closet," including job problems, insurance problems, (there still is a two-year waiting period for Medicare to go into effect), and all kinds of personal family problems!

A few weeks ago, I started to blog again. The reason is that I promised God (and my family) that I would continue to stay involved in a real way, since I had a sort of "near death experience" recently. The day after our daughter's wedding, in mid-February, I tripped down some stairs in a coffee shop, at the hotel where we were staying. I didn't think I hit my head too hard, but I did get three stitches and a horribly bruised face. I also hurt my right arm, which we thought was broken. So, I took a few weeks not doing too much, putting special healing stuff on my facial bruises.

Weary of staying home, I ordered some purple walking shoes (to wear for Lent) and was dying to take them for a walk. I had new golden headphones, and I was so excited to get outside! I was heading for a street that is about 4 miles away, but I was sure I could do it! I said, this was going to be a walk to remember!

After a couple of miles, my right leg started to feel weak, and I felt like there was a strong wind coming from the left. I tried turning right a few times, then I realized that my right leg was giving out. I was totally veering to the starboard side, and ended grabbing a tree and sitting down next to the tree. A neighbor saw me struggling, and she came to make sure I was all right. She was an emergency room doctor, so she described it very clearly to my husband when he arrived: "I took a do-si-do around the tree!"

I started at the Oak Park Hospital ER, where they did a CT scan to check my brain. Unfortunately, it showed that I had some bleeding on the brain, probably from the fall at the coffee shop. So I had my first ride in an ambulance, as they took me to "Big Rush," so a neurologist could have a look. At some point, they recommended that I have surgery right then and there to let the blood out of my brain! We opted to wait until morning to decide, after talking with our family.

During the night, I "had a vision/dream" that "FAMILY IS EVERYTHING!!" (also the T-shirt motto for the HDSA a few years ago). But Family Really Is Everything! In the morning, I talked with each of the girls about being tested for HD, because each of them has a 50/50 chance of being gene positive. I am Facebook Friends with several distant cousins, and I realized that they have never met my daughters and grandchildren. Those distant cousins also are at risk for HD, and I don't think they ever talk about it. I hope to get them together sometime in the next few month.
FYI: We opted not to have surgery, and my little brain is healing nicely. I have been going for physical therapy and occupational therapy, and I'm walking pretty straight again!

And the big news is that I am going to participate in the SIGNAL trial, (at the University of Iowa) where the medication being given is proving very helpful for people with early symptoms of Huntington's Disease. I will start in July, and will fulfill my dream of participating in a meaningful study that may reap benefits to anyone with HD in the family. My next blog will be a first-person account of someone participating in the SIGNAL trial!