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... 

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.

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! 

Ten Years with ALS!

Jan 26, 2005 was the day that Hing and I were sitting in one of the doctor’s examination rooms hearing the news that changed our life, I had ALS. Previously I had a series of testing done on my body in attempt to rule out everything else. Six months earlier my family doctor gave me a hint that it might be ALS. We made the mistake of looking ALS up on the internet and it horrified us. Three to five years to live! We were so young to live with this disease.

We were in such a state of shock we decided not to say anything to our family. Fortunately my ALS doctor was extremely hopeful and compassionate. He is on the international ALS board and said don’t give up! Hing spent time researching ways to slow down my disease. For example our family went organic.
We talked with our Colorado and Tennessee families the summer of 2005. It was a tearful time in our life. I was a manager at FedEx developing computer applications. It was extremely stressful job which was not healthy. My boss and I agreed after six months to step down. It was extremely difficult to tell my FedEx team and our people that we supported. More tears.
I first used a cane and then about six months later a walker. Eventually I received a motorized wheelchair from the ALS Association. The ALS Association support group meetings were incredibly meaningful and gave us hope! Oh I can't begin to tell you how much the ALS Association means to me. The ice bucket challenge raised so much money for research, it's incredible! More reason for hope!

In late 2005 we started building an extension to our house off of the first floor. It was finished in the spring of 2006 just in time because I could no longer climb our stairs. One of greatest things in our backyard we built a nice fire pit! I stopped camping with our Boy Scout troop so the fire pit reminded me of the camp fires of the past! My son Chris loved camping as well as me! I have fond memories of us being in the great outdoors!

I was having trouble talking in the spring of 2006 and although I could stand up on my own. The main issue was choking on food and liquids. In June of 2006 I retired on disability from FedEx.

Here's a picture of my FedEx team,  the VP of our division and my boss on the day of my retirement. 

I found it difficult to leave the daily routine but the most difficult part was not working with the people. A good benefit was I didn't have to deal with the stress. At that time Hing was my primary caregiver for a while until we hired a professional caregiver.

I was living in the extension and the nights were lonesome with my wife and children sleeping upstairs. When 2007 rolled around I was loosing the use of my arms but I could drive my wheelchair. Fortunately a good friend gave me a cool joystick device so I could still use my laptop. I love technology!

Computers were always a hobby of mine and I am very proud that my children appreciated it too. My daughter Nicole really learned quickly and she used to paint computer drawings.

She loved art and in middle school started stop motion videos by taking picture after picture. She totally amazed our family, friends and teachers! So creative!

Here's an example: 

Lego - Stop Motion Video 2007 

In June of 2007 I received my eye gaze computer, Erica.

Erica is my life line to the internet as well as allowing me to speak! Without Erica I wouldn't know what to do with my life. Communication is essential to me. How do I communicate without ERICA? I use a amazing tool called a spell board. It's double sided. My family and caregivers count the numbers until I indicate which line to say letters I invented short cut letters to make it easier for example HO is hot and CO is cold.

My spell board: 

One frustrating thing about my disease is not being able to speak  when I feel pain especially without my computer. Sometimes I want to scream in pain but cannot! So I make a horrible face but if my caregiver isn't looking at me it can be a few minutes to get relief. Fortunately I can feel everything. People who are paralyzed can't feel and if they bump their foot on something they didn't know about it.  Another problem is I have spent many years in my wheelchair sitting, I developed sores on my poor bottom. My caregivers know how to tend to it daily. 

In June of 2008 my Colorado family made arrangements for me to fly out to Colorado for a summer vacation.

PRE-flight picture.  

My dear mom lived in a handicap accessible house so it was perfect for me!

My sister Kate researched holistic treatments in Fort Collins and found a well known doctor who was willing to work with me. We were so impressed with Doctor Billica Kate, mom and I decided it would be better if I stayed in Fort Collins to get the special treatment. Just the other day Doctor Billica told me that he has learned a great deal in treating me for over 6 years and he past that on to he patients! He called me a trailblazer! I was born in Colorado and absolutely love it here; Hing knew my love for it and agreed that it would be better if I stayed. I’m so lucky to have a wife that understands me!

Kate and her husband  Ken found a townhouse in September 2009 because my mom was diagnosed with stage  colon cancer. It was a total shock to her and our family! It was the first time in our family that a family member got cancer. Mom and I have always been close. People ask me what is my secret to be happy and smiling all the time? Part of my answer is my parents taught me to be positive despite what the world hands out. The other part is that I have enjoyed living and experiencing things in my life for example being able to travel all over the world. Also my love of adventure! My dear mom passed away in March 2010. I think of her every day! I have comfort knowing that she is with me in spirit! My sweet mom was always there for me!

I bought my wonderful townhouse. Kate and Ken gutted the house to make it handicap accessible. Ken ripped the carpet out and put beautiful hard wood floors in! We hired a man to widen all the doors. The bathroom was converted to be all handicap accessible. I love living here! Luckily my wife and children come to visit once  a year!

This picture was taken in Aug 2014 up at Kate and Ken's mountain home called Sunhaven. 

In 2009 I was having trouble breathing because my diaphragm muscles were getting weaker. Most people with ALS decide not to get a tracheotomy because they don’t want to go through the trouble. They choose to die of their disease. The special treatments that I received have actually stalled my disease plus I was living in my kind of paradise! Why end my life now? I decided to live with ALS! Also I hired top notch caregivers and I was alive - It was wonderful! The operation for my trach was successful and I felt great! I tell people that I love breathing normal again.

Here's my hospital picture after the surgery. 

People ask me why do I keep going? One word – HOPE! Hope for a treatment and eventually a cure. I would like to walk again. Communication is essential, I consider myself as a great communicator. I would like to talk again. Finally I set goals or milestones. My first milestone that I set was in 2006 – was to see my son Chris graduate from high school. He graduated with high honors 14 out of 462 in 2010!

My oldest son Matt is happily married is in the Navy and has six children! In 2014 I was blessed with his wife Kim having twins! Guess what? One of the twins is a girl! It is my first granddaughter! Her name is Aurielle and her twin brother is Zephyr. Kim is active on Facebook so I get a lot of pictures and stories.

Nicole is pursuing her dream by attending a world known art  college called Savannah College of Art and Design in Atlanta. She is absolutely loving it and getting praises from her professors!

Here's my favorite video of Nicole's:

Titled "Make It Interesting"

Chris graduated with a bachelors of Science Degree in electrical engineering in December of 2014. He is currently going to grad school in the same field. Fortunately he decided to live at home with Hing while going to the University of Memphis. Hing loves having a man around the house! Chris came to visit in January for a 3 day visit. From there he went skiing in Utah. He loved it! While he was here we went to the archery range at Jax Outdoors!

I’m so proud of my children and my grandchildren!

Life is good!
Family time is the best especially in the mountains!

Many years ago - I wrote this for my father

Download the original attachment

 I wanted to tell my dad how much I appreciated him and I wrote this when I was a young adult. 

Dad 

• You taught me to respect nature and the environment by setting the best example.
• You taught me not to sweat the little stuff when I broke the jeep brake cylinder trying to learn more about how cars work.
• You taught me how entertaining a person can be by being the host at the Troop 8 awards night.  I don't think I laughed so hard.
• You helped me with college calculus and understood when engineering was too much for me. 
• Two things you said that have had a profound effect on my life:  "It is better to be a vice president than a president." and "Teaching is a dead-end job."
• Your timely assistance on my research paper during LEDC set me on course. I graduated with honors! 
•  You supported me in my first attempt at marriage (but I sensed you knew the outcome) and I never heard the words I told you so.
• You taught me to "think" by using word association in the 6th grade when I learned the entire presidential cabinet.  I received an "E" for excellence on the test. 
• You taught me patience by untying the tangled mess I would make with my fishing line while fishing at the lake in Sussex near the bungalow.
• You showed me how to love the person you marry. 
• I only saw you cry twice, once when you banged your head on the window on the back porch in Ridgewood and once when Grandpa Taylor died.
• You taught me there is more to life than riding a bus 3 hours a day to and from New York City.
•  You built character in me by getting me up at 4:00 AM to go ice fishing or deep sea fishing.  I think the pickerel and mackerel (36 each) would agree. 
• You understood the importance and value that Boy Scouting would have on my life. Because of you and mom I achieved the rank of Eagle! 
•  You taught me humor by keeping the 5 of us laughing at your jokes at the dinner table.
• You taught me how to appreciate life when we cooked a cut throat trout on a stick at 11,000 feet in the Rawah wilderness.
• You always enjoyed the gifts us kids would get when you returned from a business trip. 
• You taught me not to be afraid when you danced on stage during the Dad's Night at Somerville Elementary School. 
•  You taught me it is better to give than receive when you and mom would invite the Hope Street neighbors to our 'Open House' each year.
•  You taught me how to tolerate my sisters when we would come home from a hunting trip and they would ask "Did you CATCH anything?"

Your Son

One of the Best Colorado Vacation Spots Ever

I decided to brag on my sisters home in the mountains. She is renting it to tourists seeking a Colorado experience.

Here's the link to Sunhaven.

www.HolisticLifeChoices.com/SunHaven

People who rent can review their stay. Below is an example of one of the better ones.

The above quote was from my 21 year old son and my 19 year old daughter agrees. I had plans and schedules for rafting, horseback riding, brewery touring. They went out the window once we arrived at Sunhaven. No one wanted to leave the mountain. The directions to the home were easy to follow. The place was clean and well maintained. It was more spacious and beautiful than the pictures show. Hiking and climbing were the daily activity of choice. Night time was for campfires, game playing (Pass the Pigs and Scrabble) and reading. We did not see any bears or mountain lions, but were sure one of us would have our eye impaled by a hummingbird! The owners were kind and friendly, answering any questions that cropped up. This vacation is what we consider a "do over" because we want to do it again (and maybe raft next time!). Kudos to the owners!!

Date of Stay: 06/29/10 Review Submitted: 07/11/10