Thursday, June 01, 2017

Our A. L. S. Story

Our ALS Story:
(Written by Hing Taylor)

Our story began in 1995. We were living in a nice little town outside of Memphis, TN. Life was good for us raising two beautiful children. Don just became a business adviser on a team of professionals designing software maintaining the jets at FedEx, it was a dream job come true!

Then in the fall of 2004 Don was wondering why he had trouble with his left hand and left foot. He went to our family doctor for a check up. The doctor feared that Don might have A. L. S. We made the mistake of looking it up on the Internet! We were horrified! Three to five years to live.

Don was first diagnosed on December 29, 2004.  We received the second opinion in late January of 2005.  We were in a state of despair for many months after Dr. Bertorini confirmed the ALS diagnosis. When we asked him what would happen, he kindly said let's wait for one year. That gave us hope! We didn’t share the news with anyone for a long time.  It was too difficult to tell anyone even to our family. Don started limping during that fall season.  We decided to take a family vacation at Universal Studios in Orlando, Florida, knowing that it would be the last time we could go before Don’s disabilities became more difficult to travel. It was around Labor Day weekend that we finally told our two children that Daddy has muscular dystrophy. Slowly the news got around to all our families and friends that Don was diagnosed with a fatal disease. Friends and families offered to help in any way they can like helping with yard work, home maintenance, delivering meals, etc.

Our son, Chris, now takes care of the lawn and many other household chores that Don use to do. Don is a very computer oriented person.  The disease has affected his hands so much that he depends on Chris to be his hands, like hooking up an Ethernet cable to his newly built downstairs room so he would have faster internet access. He helps his Dad with his power wheelchair and the ramp whenever we have to go somewhere. My daughter, Nicole, had to help with more household chores.  Both of our children help fix meals for their Dad when I am running an errand. In 2006 I had to go back to work part time while the kids are in school. I have to get up earlier these days to get myself ready before I get Don ready for the day and feed him a hot breakfast before I go to work.  I depend on family members and my neighbor to come fix him lunch while I’m working. I basically have to do everything for him since he cannot do much for himself.

Every week in the summer in the town square the town put on a free concert and my family loves to listen to music.  We have family night and watch movies together.  And me, I enjoy reading books. I enjoy cooking when I have the time and working in the garden.

Holiday Traditions:  We have a large Chinese/American family.  We all get together on Christmas Day to celebrate. Everyone brings a dish or two to share.  The children do a gift exchange with each other. Everyone plays Dirty Santa or White Elephant where people take gifts from each other until they have one that they like. Our kids just enjoy being around all their cousins. All the adults gather around to catch up on what’s been going on and to enjoy all the delicious food.

In the beginning of 2008 I was getting burned out caring for Don even though I hired a professional caregiver who got Don out of bed in the morning. So Don talked with his family in Colorado and they planned to get Don out to visit for the summer months. Don’s mom lived in a wonderful wheelchair accessible home. It was perfect! The interesting part was his family is very interested in holistic and naturopathic approach to health care. Don’s sister Kate did research in the Fort Collins area and found a doctor who is known for treating fatal diseases. Don started treatments. We decided that it would be beneficial for Don to stay with his family.

Don loved living with his mom, Ruth! It was like old times. She loved caring for Don! 
Our family was shocked when Ruth was diagnosed with colon cancer in 2009. It was time to give Ruth a break. Kate and Ken searched for a town house for them to move in with Don. At that point Don was having trouble breathing. His doctor recommended that he gets a trach. That was January 2010. Shortly after that Don’s mom passed away. She was in a lot of pain but now she is with Don’s dad once again in heaven! 

The next few paragraphs are highlights of our family members and what’s happening…

Kate and Ken are living full-time in their mountain home called Sunhaven and last year in the spring they were fortunate to have a team of volunteers come to build a beautiful deck on the side of their house. Ken retired from CSU and from his part-time at Don’s favorite outdoors store called Jax Outdoor Equipment! Within the last year they have been working on improving home up in the mountains. In December we had a wonderful family reunion including don’s wife and kids! Kate is dealing with her breast cancer and is on hospice care. She is on oxygen day and night but remains upbeat and positive!

Don’s oldest son Matt has 6 children with Kim and is living in CT in a new home they bought! I admire them! They are raising chickens! Matt is still in the Navy but considering getting out. Kim is loving taking care of their 6 children and is home schooling their younger children. Their lives were brightened by Kim giving birth to twins, a boy Zephyr and Aurielle in 2014! Aurielle will be well protected by her 5 big brothers!

Chris is living right now in his own apartment in downtown Memphis with his girlfriend, Margaret! We are very excited when he graduated in May of 2016 with his master’s degree in electrical engineering last year! Plus we are thrilled that he accepted a job with AT&T as a manager building the new optics network! I’m delighted that Chris is close by and I can see him occasionally! Don keeps in touch with his job accomplishments. We are very proud of Chris!

Our daughter, Nicole is the artist of the family.  She is very passionate about drawing.  She also loves to draw utilizing the computer.  Throughout grade and high school she won a lot of art awards including cash prizes! In 2016 Nicole started her senior year at the Art College called Savannah College of Arts and Design. She absolutely loves the challenge of all her classes. Nicole said she is well known in animation and her professors recommended that she tutors students; she is getting paid for tutoring! She is working on her senior film project right now. She decided the do it about ALS! Don and I can’t wait to see it! The college is in Atlanta. Nicole loves exploring the big city!

As for my husband, he is enjoying living in the town that he went to college in, Fort Collins. Don was born in Colorado. There are so much fun activities going on in a college town! He loves adventures outdoors especially in the mountains! This year marks his 12th year with ALS! He employs 10-12 caregivers mostly Colorado State University students.  Don continues going to his naturopathic doctor on a weekly basis to help slow down his disease. He loves texting and emailing his family and friends on a daily basis. The best part his day is finding what’s happening on Facebook! Plus he manages his care to the best of ability. He treats each day like an adventure! Here's one of his favorite birthday gifts...