SCA7 Through My Eyes

My kids are back in school, so now I have time to write again.

I would like to start at the beginning.

Like I said, for me and my story it all begins with my Grandpa Paul. He was 34 years old, and life was pretty much perfect. He knew nothing about SCA7 and that it was in his family. His father Clifton had it, but he was never diagnosed.  Clifton started showing signs of the disease at an older age, so it progressed very slowly and was confused with aging. Also,my grandpa’s only sibling had not begun to show any signs or symptoms of the disease at this point in her life. So he was completly oblivious to the fact that he had SCA7 and the great destruction it was going to cause.

My grandpa was an amazing person. He did well in high school where he was a star basketball player and received a scholarship to the University of Wyoming. However, he declined and instead went to play for Weber State University. Later he transferred to Brigham Young University. He did well in college, but he put his schooling on hold to serve a three year LDS mission to Japan. He learned and matured much from his experiences there including the time he served as a branch president and district president. When he returned home he attended college for an additional quarter before entering the Air Force cadet program. He excelled in the Air Force. He became a Major, and he flew often. He was a good hard working man.

These are all great accomplishments, but the greatest of them all began ten years earlier when he met and married my wonderful grandma, Ida Marlene. Shortly after being married, they started a family together, and by the time he was 34 they had five beautiful and healthy daughters:  Caren, Cindee (my mom), Cathy, Carolyn and Chris.

He was a very good husband and father. They were a happy family; no they were not perfect-no family is-but they were happy.

Because my grandpa was in the Air Force, he and his family lived in many different places. At this time, they were living in Montgomery, Alabama where my grandpa was attending Command and Staff school. This is when he first began to notice his eyesight going bad. He was having a hard time seeing the board in his classes. Unfortunately, his bad eyesight could not be fixed with glasses and continued to worsen. In addition he started to notice problems with his balance.

Obviously eyesight  is a big deal for pilots, so the Air Force sent my grandpa to the main Armed Forces medical base, Wright-Patterson, to be further examined. Many tests were done until he was diagnosed with a neurodegenerative disease called Ataxia. According to the doctors, Ataxia only explained the balance problems, not the loss of eyesight. This remained a mystery.  My grandpa did realize that the Ataxia was likely passed onto him from his father.  He remembered his dad having balance problems just like he was now experiencing.

My grandpa then got transferred to Omaha, Nebraska where he was given an office job and would fly very little. This was a huge disappointment to him. He LOVED flying.

While in Nebraska, he was called into the leadership of an LDS congregation where his family attended (i.e. counselor in the bishopric). During that time their congregation (“ward”) learned the great news that a new church building had been approved to be built for them. In those days members were asked to fund the construction of their chapels. As part of the bishopric, my grandpa met with members to ask if they would be willing to donate money and how much. One day, he met with members for an entire Sunday, and when he came home late and tired that night, he had lost his voice and could only whisper. He never got his voice back and spoke with a whisper for the rest of his life.

SCA7 does cause a certain part of your throat and tongue to gradually decrease in control. Slurred speech, trouble coughing and easily choking while eating food all happen as a result. My grandpa only being able to whisper from this point on surely was linked to the disease, but he is the only member in my family to experience this particular disability.

This is just the tip of the iceberg though. Deep tragedy is just ahead and will continue on and on and on… There are two things that will buoy them up and leave them standing with their hearts full of love: their faith in Jesus Christ and family.

It is amazing to me how much parents can impact their posterity for generations! Yes, I inherited SCA7 from my grandpa, but I am richly blessed by his great faith and for all he did to build a strong and happy family. I do not know why God blessed me so much by placing me among the posterity of my Grandparents, I definitely did not deserve it. I am just very grateful for the grand legacy they have left me!

Next post:  Chris and Don