Sunday, January 15, 2017

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!

Monday, November 14, 2016

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! 

Sunday, September 11, 2016

A Story About My Mom


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.

Monday, March 28, 2016

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

Tuesday, September 08, 2015

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! 

Thursday, March 19, 2015

My College Major

When I was first accepted into college at Colorado State University (CSU) my major was Forestry because of my love of the great outdoors. I love to fish, hunt, rock climb, backpacking and snow skiing. However I learned that PhD’s in Forestry was basically only doing meaningless tasks by emptying garbage bins in parks. That was in 1975. I didn't want that for my career.

My dad said that I should try R. O. T. C. because he was in the Army many years ago. I joined mainly because my best friend from high school joined with me. My wise father said I would learn a great deal. I would get experience that no other job would offer. He said one day I would act as a lawyer and the next day a judge. Another day I would act as guidance counselor and on and on, you get my point. It didn't take long after I was in the Army for a few months to find he was right!

My family wasn't that well off so I applied for and received a two year scholarship in my sophomore year. I also worked 3 jobs during my five years at college. In my sophomore year I worked in the office at Allison Hall, at the Student Center washing dishes (oh yeah!) and at a gas station until closing time. The R. O. T. C. program paid me $75 each month that paid for my apartment rent. Believe it or not that was my total rent payment! 

My dad was a civil engineer and at that time was getting his PhD at CSU. He convinced me to go for mechanical engineering. I love working on cars and repairing anything! Unfortunately I didn't have a strong background in math. In my second year I was struggling in all my classes. Dad was extremely intellectual yet down to earth. Fortunately my dad would help me study because he had an office in one of the buildings on campus. Even with his help my G.P.A. was suffering. He knew I could not continue so he found a major for me that was less theory and more practical. 

I changed to Industrial Technology! Since I was already an automotive mechanic my automotive repair classes were easy. We learned all about the manufacturing process for example how production lines work and how to build things. The eagle in my living-room was something I made in cast iron shop!
My favorite class was woodworking! When I married Hing I would build furniture for our house and I was the car repairman in my family including Hing's family! 

I have pictures of the furniture that I built. Here are two of favorites. The picture below is a book shelf that we stored board games.

I built a shoe rack in our garage because of the Chinese tradition of taking off your shoes off before entering the house. I built it with love for my dear wife!  It also stored our baseball and football equipment etc. 

In the Army I was a maintenance officer. Four years of the Army and I loved being stationed in Germany but I didn't like the Army that much. Too political. After I was in Germany for a few years I called my dad and asked him if he liked being in the Army and he said that he hated every minute! I said thanks dad!

Thursday, February 12, 2015

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: 

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!