21 Year Old Angel
Jordan was born on Sept 6, 1998-April 18, 2020. He was diagnosed with JHD in January of 2013, two weeks after his father passed away from HD. Jordan began showing behavior signs of the disease when he started kindergarten. We were not aware of the behavioral issues associated with the disease at the time. He would chew on his shirt, or bounce around the class room. He moved on to head patting and making strange noises. He had to appear before a judge twice: once for shooting another child with an air soft pistol, and another for assault charges against a special needs teacher. He served community service for the first offense. The judge dropped the charges for the second offense due to his disease. Jordan was able to graduate from high school in 2016.
Jordan had an infectious smile and was very ornery. He knew the value of people and loved to spend time around others. Jordan was very intelligent and loved to play his PlayStation 2 and 3 until the Parkinsonism took over. He loved to watch football. He vicariously played through his friend Evan in high school. Jordan was able to sit on the sideline to watch the games. Evan would come over to Jordan with a fist bump when he made a good play. Jordan also loved the Nebraska Cornhuskers and in 2017 he bailed on rooting for the Denver Broncos for the New England Patriots. He also loved watching Marvel movies. He loved fishing and exploring the Rocky Mountains.
Update March 2019 Jordan fell out of the wheelchair as we were trying to go outside to get some sun. He's got bad road rash and is in bad pain.
August 2, 2019 Update on Jordan: I’m not posting this update for sympathy or as a complaint. I’m just stating what we are going through for family members far away and other JHD families. Jordan started wetting his bed two times per night on July 6th. I was getting him up at different hours in the night to take him to the bathroom and found him wet (bed soaked) every time. I decided that it was time to try the external catheter again. (He kept pulling it off the last time I tried it). He kept the catheter on for little over a week then figured out how to pull it off again. I’m experimenting on different methods of keeping him dry and so far failed at all of them. When I get him up in the morning it is immediately shower him (he gets cellulitis very easy) and wash his bedding. (Water is very expensive in Sterling!) During the day he has to be taken to the bathroom every half hour and doesn’t always succeed in the trip. He is fussy and agitated at the slightest things. I have to constantly adjust his medications based on his behaviors for the day. It’s a lot of work on my part and I’m here by myself for most of it. The Parent CNA program that pays me to care for him ends on September 5 and I currently trying to find the successor program that is the best fit. Not a bit of this is easy. We could use lots of prayers for guidance. I do read your responses but I may not be able to answer.