2017 Fort Collins A. L. S. Walk

Join Don Taylor and the Colorado Taylor Trailblazers

at the Fort Collins ALS Walk

We will be wearing RED SHIRTS to show we are on Don’s team.

Please join us from 11 am to 2 pm, at the CSU Oval.

Sunday, September 24^th

Registration starts at 11 am, Walk starts at noon.

Don’t miss the Fun, the Food and the chance to Make a Difference

in the lives of those that need your help!

Register to walk online at http://webco.alsa.org/site/TR?team_id=357415&pg=team&fr_id=12619&et=6QAx6mOPglRXX3KfHEgtTA&s_tafId=305652

or just show up and register at the Oval.

Day of Walk-

WEAR A RED SHIRT to show you are a member of Don’s team. Dogs being walked can wear a red bandanna. We will walk in heat, rain, sleet or snow… Hopefully, the Colorado sunshine will be beaming down on us again this year. Registration Tables will be available for all people who have not already registered. Please be sure all walkers (even those in strollers) register.

Directions to parking-- West on Laurel Ave. left at Meldrum to enter the Main Parking Lot for the Lory Student Center. Veer to the LEFT and park behind Music Building. If those spaces are full, park in the Student Center Lot- unrestricted spots.

Donations-- The ALS Walks are the major source of funding for the ALS Association which provides important resources for PALS (People with ALS), their families and caregivers. Donations to ALSA are most welcome, but NOT REQUIRED to join us at the walk.

As you may know our family and Don’s many friends have been participating in the Memphis ALS Walkathon each year since 2005. In 2008, Don formed a Colorado team of the Taylor Trailblazers to join him at the Fort Collins “Walk to Defeat ALS.”  Join us this year, and help us make Don’s team the largest at the CSU Oval! 

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 12^th 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... 

My Eye Gaze Computer

My son Chris and I were talking about the upgrade to my computer and how eye gaze is becoming increasingly popular with computer gaming. I have seen videos of it. 

I received my first eye gaze computer called Erica in 2007. It's short for... Eye Response Interface Computer Apparatus!  That was the time when I was loosing my ability to speak, it was extremely frustrating! I reached a point in that year where only my wife could understand what I was saying because she was with me most of the time.  

Unfortunately last year my great computer died a wicked death. I took to get it repaired but they said it was too old and they couldn't get the parts. It was a dinosaur in computer years! The good news is they were able to save my data and gave me an external hard drive! 

I had to transfer to my other computer which I have been practicing with for a while. It's called Tobii. I was very fortunate to have a smart speech therapist guide me through the process of picking the right computer for me. She offered me five different types of computers to test! When I worked for FedEx I absolutely loved testing the software. I would tell my coworkers that if you locked me in a room and told me that I would only test computer software, I would be a happy camper! I tested all five, it took me months. Finally I narrowed it down to two. Tobii and The Edge. I chose Tobii because it has a built-in camera and it has solid state internal components. 

The built-in camera was very important because I take my computer with me on road trips for example to my A. L. S. support group meetings and Erica was difficult to carry. Each time I feared that my caregiver would drop Erica on his camera and I would be without a computer! Oh 

I have an interesting story about the Tobii Company for you, they bought out (it was a hostile take over) the company that makes Erica a few years back and fired all of the people who were my friends. I got to know the Erica support people very well. A few years later Tobii bought out the top leading provider of eye gaze computing called Dynavox! I had a Dynavox once; I traded it in for Tobii in 2013. 

I never got used to Dynavox, was poor at tracking my eye but it was horrible with the Internet, I live on the Internet! 

This picture is of me at my support group meeting with Tobii. 

Tobii is most excellent at tracking my eyes! In fact Tobii eye tracking calibration gets better as you use it, the algorithms in the program are extremely well designed! I’m happy to say that I have perfected Tobii, it only took me a few months! I have to say that the Tobii support people are very knowledgeable and helped me with all my issues! 

That's why Tobii are entering into the world of gaming!

The Question of the Day

How old am I? 
I was thinking about my life and times. Then I realized that many of my young caregivers don’t know what it was like when I was growing up. Some of my student caregivers are younger than my children!  
I was born in the late 50’s when photos were only in black and white.

Plus my dad was a big picture taker and he had a camera that had an exploding flash, in other words once you took the picture the flash was dead. 

My dad worked in N. Y. C. in the 60’s and I loved going to the city! I remember going on school field trips from my home in northern N. J. to the city and one great visit was to the United Nations. After the tour my dad picked me up when the field trip was over and we walked to my dad’s office. I had such a good time meeting the people that he worked with especially his secretary who let me play with her Dictaphone! 

The other incredible field trip was going to see the Broadway musical called Jesus Christ Superstar. I remember some parents won’t let their child go because they thought the play was blasphemy! 
Another fond memory was my dad and I going to Yankee Stadium! I saw Mickey Mantel and Willie Mays! 

My parents were big into scouting and I joined the Cub Scouts. My mom was our den leader! Also many of my friends were in my den.

I passed it along to my son Chris and we joined the Cub Scouts in Tennessee.

I was his den leader! Soon as he was old enough we joined the Boy Scouts. 

We lived in a nice quiet neighborhood and my friends were very close. We played sports all year long. Stick baseball, basketball, tag football, street hockey and soccer. Years after we went our separate ways for example marriage and children the neighborhood boys got together twice! My best friend Dave mom called us The Hope Street Gang! We lived on Hope Street in Ridgewood, N. J.  

My family decided to move to Colorado in the early 70’s. It was difficult for me embracing the idea of leaving my great friends, I knew it would be okay. In Colorado I grew to absolutely love the great outdoors. My dad encouraged us to get out and enjoy the beauty of Mother Nature.  Backpacking, skiing, trout fishing hunting and rock climbing filled my life! When I was in college my dad and I shot an elk!  Dad named him Ralph! 

On the negative side I grew up in a turbulent time in America. The war was raging in Vietnam and the nightly news on TV reported how many Vietcong were killed but I knew it was a lie. America was protesting the war. Many songs were written and I was petrified that I would be drafted. Fortunately I was not drafted; President Nixon pulled us out of the war. It was a disaster for veterans coming home being hated! 

One of my favorite memories was when my parents took us kids to spend the weekend with my grandparents who owned a lovely house in Sussex, N. J. On one evening we all gathered around the black and white TV to watch Apollo 11 and the historic moment when Neil Armstrong set foot on the moon! 

Life is good! 

A Story About My Mom

MY NIECE RUTHIE…OOPS!  I mean RUTH

I first met Ruth when Bill took me to Saddle Brook where she lived with her parents, Herman &  Winnie (Bill’s big brother & Sister-in-law).  Bill & I were “just friends” then…or so he thought.  Ruth was a pretty little thing.  She was very excited about her upcoming wedding to Donald Taylor and proudly showed off things she had in her hope chest in preparation for the big day.  (When the big day came Bill took someone else. That was o.k.  I forgive him.  I guess he hadn’t succumbed to my charms yet.)

Bill & Ruth were very close…kind of like brother & sister rather then Uncle & Niece.  They had both told me about the fun they had putting on puppet shows when they were growing up.  I wish I had known them “way back when”.

Ruth and Don had three children…Kathy (now Kate) Donald (now Don) and Bonnie (still Bonnie). I remember them visiting us when we lived on Park Place & later when we moved to Sollis Court.  It was always fun having them there and having them playing with our little ones.

Later they all packed up & moved to Colorado.  Tall and handsome Don was a very

intelligent young man & always seemed to be seeking further education.

When we became a “traveling family” we were always welcome to stop for a visit to their home in Colorado.  I remember though that on one of the trips we arrived to find that Ruth was not at home!  A kindly & trusting neighbor gladly opened the door and let us in.  (Now-a-days she probably would have called the police in case they didn’t have the Brinks alarm set). Anyway, darkness fell & Ruth & Don had still not returned so we all lay down on the living room floor for the night...all seven of us.  

Evidently, Ruth had forgotten to tell him about our impending visit.  When he returned & switched on the light  the poor fellow was amazed to see all those bodies on his living room floor…he said curiously, “Did Ruth know you were coming?” Later when Ruth arrived at home she again welcomed us with open arms and once again made us feel very “at home”.

We discovered the Ruth was an excellent tour guide of those Colorado Mountains.

She took us on a tour once and driving up higher & higher on those mountain roads I was scared to death because she kept taking her hand off the steering wheel to point at the mountains.  Grandma Mandel told me later that she was scared too and even though she wasn’t Catholic if she had a rosary she would have used it! But Ruth got us safely back to lower ground.  Yes, she was an excellent tour guide.

 Later her family moved to a city above Denver.  They had a beautiful view of the city from their porch. They couldn’t seem to get away from us because sure enough we stopped by once again. (The highlight of that visit I imagine for Bill was when he lay down on the floor to receive a massage on his aching back!)

Their final home in Colorado is in beautiful Fort Collins where her girls and their families are still living near by.  Donald and his wife Hing and their children however had moved south to Tennessee.   Of course years ago, we visited them there in Fort Collins, no way could they escape from the traveling Mandel clan.

Ruth is a very caring, strong & loving person.  He husband Don had became very ill and was confined to a wheelchair for quite a while.  Ruth took care of him faithfully and lovingly until his unfortunate death at much too young an age. 

And now, her son Donald has been stricken with a devastating disease...ALS…and has returned to his beloved Colorado.  Ruth is there taking care of him with never a complaint, always there at his side showing love and devotion to her son & trying to find ways to make him happy & comfortable. Tending to his every need & bringing him to places that he’d always loved to be. Ruth always seems to be there for others rather then herself.  She is truly an angel in disguise.

For My Daughter - Nicole

This song is very special to me because I heard that Robert Plant from the rock and roll band Led Zeppelin wrote it for his daughter. 

So each time I hear it, I think of my daughter Nicole! ! 
Nicole I deeply love you always and forever!
Your very proud father 

All of my love by Led Zeppelin

God is great!

The title of my story came to me in the middle of the night when I was thinking about my son Chris. Believe it or not in the year he was born the hospitals were in a panic because new born babies were accidentally getting switched. My wife Hing and I were worried that our first born would be mixed up. Fortunately God took care of us by placing a dark mole right by Chris’s left eye! 

We heard of a wonderful and caring pediatrician in our town named Doctor Lee. Doctor Lee was from Korea. He gave us fantastic advice when I asked him what we should do about the mole. To me his mole looked very big on his baby cheek. Should we have it removed? But first I must tell you a short story about my childhood. I grew up in an almost all boy neighborhood in New Jersey. Boys can be cruel and I was worried that as Chris got older he could face some cruel things to him just as I faced growing up with boys. Doctor Lee’s advice was very profound, he said we must wait. He said as Chris grows his mole will be less pronounced. Hing and I took his advice and did nothing. Thank goodness!
Chris was the perfect baby! He rarely cried unless he needed to eat or we needed to change his diaper. We were quite blessed with Chris! I absolutely loved watching him grow. The best compliment that people would say about Chris is that he is extremely observant of his surroundings! It was if the world was his playground! We were so proud of our beautiful son.
When Chris turned 3 I was fortunate to get a job in Memphis working for FedEx. Hing’s parents and a few of her siblings lived in the Memphis area. I honestly think that was the best thing that happened in our lives! Our previous home was in Virginia. Neither of us had relatives in Virginia. That’s why it seemed like a miracle! Hing and I have the same family values, we loved being with our families!
As Chris grew older Hing asked him at the age of 7 or 8 if he wanted to take off his mole. He said without hesitation “No, I don’t want to because that makes me unique! 
What I loved about watching Chris grow up was his interest in building things just like me! 

Scouting is extremely important to me and I was excited that Chris was finally old enough to join Cub Scouts! I loved being with my son during scouting activities especially camping! In Cub Scouts the fathers would sleep in their tents with their sons.

What I loved about scouting is what it stands for and the benefits to our community! I along with the other adults enjoyed teaching our sons how to live comfortably in the woods. Scouting offered Chris great opportunities to grow. He learned how to cook in the outdoors, how to navigate with a compass, learned the value of citizenship, developed self-confidence and leadership skills.

The very best thing about Chris is that Hing and I are truly grateful that he has always been extremely close to Nicole! Here's one of my favorite pictures of them. 

We feel confident that my wife and I raised Chris to be the best that he could be and not to take life’s ups and downs seriously. We love Chris and are excited to learn what’s next when he graduates with his master’s degree in electrical engineering soon!