Little Bit of an Update

This past week, Jan and I had the opportunity to take part in the Huntington’s Disease Society of America (HDSA) national convention. Because of the pandemic, it was a virtual gathering. It was both informative and inspiring. There were sessions on what to expect, advances in research, and how others were coping. Due to our schedule, there were many things we couldn’t get to, but it was all recorded and will be on the HDSA website.

As Jan’s HD progresses, it was good to be given a sense of what lay ahead. Even though it will get more difficult, it is comforting to be armed with the knowledge of what is going on and some ways we can cope. It was also good to see how different people were dealing with the disease. There was not a sense of despair or sadness. There was more of a feeling that this is the way it is and right now we have to deal with it and live our lives as best we can.

There is also good news for the future. There is promising research that may lead to making HD a disease that we used to talk about. It’s possible that some day the faulty part of the gene will be tweaked and will not be an issue. While we don’t know if it will happen soon enough to help Jan, there is hope for our children and grandchildren.

Please continue to pray for us as we navigate the changes that will happen and learn to deal with each new normal as it comes up.