Lifeinthefastlane

Trust Me

2009-07-14T11:54:00.000-07:00

A lot of people have commented on my positive attitude. Trust me, I have always had that attitude. I have always thought positively, cause I have seen so much negative in the world. I have seen extreme poverty in every country I have been to. But those people were always kind and welcoming. I figured that they were so far down, the only place to go was up. But they never thought they were poor, and they have the same dreams I and every parent has for their children.

My positive attitude comes when I see doctors that look at me and know there is no cure on the horizon. Their eyes tell me. I really appreciate the help my wife and I have received. But at the end of the day...when my wife literally puts me in bed, adjusts my bi-pap mask, makes sure I am comfortable, and then she gets in bed and hugs me. My wife has the hardest job of all. First she is looking at the man she married some 37 years ago, and watch him in one year change from a strong vibrant man, who was never afraid of work, who participated in everything.......to a man who is completely dependent on her care.

Trust me....I have always loved my wife, but I have seen a new side of my wife. She cares for me with soft hands and an even softer heart. She is always looking for ways to make her job easier, cause she knows if she finds a new way to do something, it makes it easier on her, and easier on me. I see the caring and genuine love she has for me.
Trust me, I know I am very lucky.

Trust me when I say ALS sux, and it will get even worse...I know it.
Trust me when I say I have no alternative but to think positive.
trust me when I say I am thankful for what I have...my wonderful wife, and 4 wonderful sons.

Katie Courics STORY

2009-07-03T10:49:00.000-07:00

CBS) Lou Gehrig might have considered himself lucky. But he couldn't have imagined that seven decades after his emotional farewell, there would still be no treatment for ALS.

"When I was initially diagnosed, the doctors, three different doctors, told me the same thing: 'There's nothing we can do. Go home and die,' basically," said Philip Carlo, an ALS patient.

But CBS Evening News Anchor Katie Couric reports that science may finally be making the kind of progress that would have made the iron horse proud.

"Much as those Yankees featured some of the greatest teamwork in the history of baseball. We have assembled a dream team of scientists and clinicians to work on the problem," said Valerie Estess, co-founder, Project ALS.

Once competitors, researchers from both Harvard and Columbia are working together - with skin samples from both patients and healthy donors to better understand what causes this disease.

"Well, for the first time we can now have billions of these cells to study in the laboratory and ask why it is that they get sick," says Dr. Kevin Eggan of the Harvard Stem Cell Institute.

For more about Project ALS click here
For more about MLB and ALS click here

In ALS, nerve cells - called motor neurons - become incapable of sending messages from the brain, to the spinal cord, and on to the muscles - resulting in paralysis and ultimately death.

"You're alive. But you watch yourself die, and you can't do anything about it," said Carlo.

Rather than retrieving the motor neurons from the spinal cord of patients, a procedure that's far too risky, scientists are creating them from scratch.

"Skin cells are very accessible, but they have nothing to do with the disease. So that's why we've had to find out a way of turning the skin cells into motor neurons," said Chris Henderson, Do-Director, Motor Neuron Center, Columbia University.

Couric decided to donate some of her skin to science.

A tiny piece of skin is put it in a Petri dish, where cells then multiply. They are genetically modified to behave like embryonic stem cells - capable of becoming any kind of cell in the body.

"They have all of the characteristics of embryonic stem cells but they don't come from the embryo," said Dr. Eggan.

They're then able to manipulate those very malleable stem cells to become motor neurons - enabling researchers to do what's never been done before: study the progression of ALS under a microscope.

"We want to compare the motor neurons from ALS patients with the motor neurons from healthy individuals. And through that we really do believe that we'll come to a fundamental understanding of what leads to ALS," said Henderson

Which in turn, should help them develop a treatment for the disease.

Carlo said the research is essential, "we have light at the end of the tunnel. And that -you can't ask for more than hope."

Hope, that even the luckiest man on the face of the earth never had.

At the end of his speech, Gehrig said, "I might have been given a bad break, but I've got an awful lot to live for. Thank you."

©MMIX, CBS Interactive Inc.. All Rights Reserved.

Musings

2009-05-20T11:21:00.000-07:00

A lot has happened to me. First of all I feel very lucky to have a wheelchair van. I honestly think I would go bonkers if I didn't have it. To make it even better, my wife likes to drive it, and she and I like to go to the same places.(honestly, I will go wherever she wants to take me, I have suggestions, she has the steering wheel.)
I realize also, when I read about ALS, that the articles always say, if not always emphasized, that the survival rate after diagnosis is 3-5 years. I have had doctors tell me that. I do not say anything...except I think horseshit. I will prove them wrong. I know I have progressed quicker than usual in my disease. But I plan to live and enjoy life for a long time.

I do not want people to feel sorry for me, or anything like that. I want to live and do things to the best of my ability. I did that in my career in the Navy. I hope I taught my sons that. Do not say, Chuck is going to die, say what can we do to live.
Lets go to the movies, the park, the store. Or lets sit around and shoot the shit. I like that.
I know I am going to die, but not today...or anytime soon. So lets do something.

Scared and Embarassed.

2009-05-12T15:20:00.000-07:00

Atring and I went to the Casino to have some fun. While we were there, I needed to go to the restroom. Normally that is not such a big deal, but I have had problems standing, and even getting up from a sitting position. Anyway, I went to the head and found the stall for disabled people, of which I am sadly a member. I parked my wheelchair and turned it off. I stood with much effort and prepared to do my business, Suddenly my legs buckled, and I am down on the floor and wondering how to get up. I suddenly feel so helpless, In a bathroom alone and needing help..and I cannot talk. I sat bewildered trying to get up. But the restroom floor is very slick and there s nothing I can grab to help me up. I had my dynavox speech maker.I typed in "Help Me Please."
After about 20 minutes someone opened the door to the stall. It was a big guy. He said
"Do you need help?" He came over and got me up by the arms, but I kept slipping down. He finally lifted me by putting his arms around me and putting me in my chair.
I breathed a sigh of relief. I thanked him so many times, gave him my card.. and I left. I have never felt so useless and helpless. Thank God I got help.

May Showers

2009-05-05T08:43:00.000-07:00

It has been over a month since I posted. But my hands are getting weaker and it is getting harder to type.
I have been to several doctors this month. The first was at the UCSD clinic. They see my progression and asked if i needed anything. I met a VA doctor there, He was a good guy, just trying to find ways to help me. We went to the VA hospital, and they gave me a manual wheelchair. We went back a few days later to make sure I was enrolled. They recommended a home care nurse come by weekly. Atring liked that.

We went to the Children's Hospital in La Jolla. They have a great Muscular Dystrophy program, and as a part of that a great ALS chapter. A doc came in to examine me. He was a nice guy and did tests. We got a detailed analysis from him in the mail. He said I have less than a year to live. When I read that I said "horseshit." I do not think he took into account my will to live. I know that I have a lot to live for. And I enjoy life. Problems and triumphs are all a part of life. Problems are not a big deal to me, I see them and figure a way out, if I can. If I cannot solve it, I just forget about it.

I can still walk, although it takes a lot of assistance. I cannot talk, eat or swallow. I cannot get dressed alone. And my wonderful wife gives me my showers.

I will post more. I have but one life and I am going to live it the fullest.

Life in the Hospital

2009-03-15T10:43:00.000-07:00

I just got back from the hospital stay Thursday evening, I went in because I was vomiting badly and did not want to lose any more strength. I got there about 0400 Tuesday Morning. The staff at Balboa is very very Good. The finally alleviated my problem and then searched for the problem. I was sent to x-ray, mri, ultrasound, and nuclear medicene. They finally told me that my gall bladder was bad, They wanted to take it out but the doctors warned me that I would come out of the operation with a trach, and would be ICU for a while (they said 4 wks). To say I was scared was an easy understatement. I was terrified. They finally said that another option would to be on AntiBiotics for 6 weeks and see if that helped. We will see.
I am regaining strength back, but noticed I can no longer get up from a sitting position without help.

March Musings

2009-03-09T09:02:00.000-07:00

Well not a lot has happened. I did get a new wheelchair, and I like it a lot. We recently got a van that I can travel in with my wheelchair. It makes things easier for Atring and I.
I am seeing with all the people we visit that some of them do not know about ALS.
I educate them as best I can, but there first question is "How did you get that?"
I wish I knew.
With the start of the President Obama term, we may see a reversal in the stem cell mandate, and see more research using stem cells. I hope so. I am clinging to any hope for a cure.
I don't know what else to say.

New Wheelchair

2009-02-16T19:57:00.000-08:00

Well today I got a new motorized electric wheel chair. I am happy is some ways, but unhappy in other ways.
Although it will be good way to get around, I fear that people will look at me..knowing I can't talk..and they will think I am stupid and either ask questions to my wife or completely ignore me.
But it is a bonus, as I fall down even more these days( trip on my own feet) It will keep me safe.
Atring and I are going on Wednesday to take a look at automobiles and vans that are built for handicapped people ( I guess I am that).

Wisdom..I Hope

2009-01-29T09:01:00.000-08:00

It has been my experience that folks who have no vices have very few virtues.
- Abraham Lincoln

You can fool some of the people all of the time, and all of the people some of the time, but you can not fool all of the people all of the time.
- Abraham Lincoln

"A government big enough to give you everything you want, is big enough to take away everything you have" -- Thomas Jefferson

Listening, not imitation, may be the sincerest form of flattery.
- Dr. Joyce Brothers

The late Dr. Adrian Rogers, 1931 – 2005

"You cannot legislate the poor into freedom by legislating the wealthy out of freedom. What one person receives without working for, another person must work for without receiving. The government cannot give to anybody anything that the government does not first take from somebody else. When half of the people get the idea that they do not have to work because the other half is going to take care of them, and when the other half gets the idea that it does no good to work because somebody else is going to get what they work for, that my dear friend, is about the end of any nation. You cannot multiply wealth by dividing it.""Love is among the most pernicious and contagious of diseases. We who are afflicted with it can be detected by anyone. Dark circles under our eyes show that we never sleep, kept awake night after night by embraces or their absence. We suffer from devastating fevers and have an irresistible urge to say stupid things.

"Love can be induced by dropping a pinch of loveme with feigned casualness into a cup of coffee or soup, or a drink. It can induced by not prevented. Holy water does not prevent it, nor ground up host, and a clove of garlic is absolutely useless. Love is deaf to the divine Word and to witches spells. No government decree has any power over it nor can any potion prevent it, although women in the market hawk infallible brews complete with guarantees."

--Eduardo Galeano in the Book of Embraces

'I disapprove of what you say, but I will defend to the death your right to say it,'
Voltaire may not have said this, but he believed these words in action and in all the speeches he made . He lived from 1694-1778

God grant met the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

With or without religion, you would have good people doing good things and evil people doing evil things. But for good people to do evil things, that takes religion.
- Steven Weinberg

The government consists of a gang of men exactly like you and me. They have, taking one with another, no special talent for the business of government; they have only a talent for getting and holding office.
- H. L. Mencken

Carlsbad Marathon

2009-01-26T15:28:00.000-08:00

CARLSBAD ---- It was a contest of happy shout-outs for relatives, friends and good causes Sunday on the periphery of the annual Carlsbad Marathon.

"I like to think my daddy's going to win and share his medal with me," said 4-year-old Patrick Rainey of Coronado, whose sister Leslie, 24, had traveled from Baltimore to race alongside their dad Joe.

The family was among nearly 10,000 runners completing the marathon and half marathon races.

Josh Spiker of Ventura finished first in the marathon, completing the 26.2-mile race in 2 hours, 24 minutes, 56 seconds. Shawna Wilskey of Burlington, Wash., was the top woman in 3:01:17. The half marathon winners were Wesley Korir (1:02:45), and Jane Kibii (1:12:26).

Thousands of fans lined the race route before daylight, quickly filling up hundreds of parking spaces at the Westfield shopping mall in Carlsbad to cheer. The mall's shopping carts proved handy for the "On a Roll for a Cure" team for wheelchair-bound Charles Cook of Rancho Penasquitos, who lost his ability to walk and talk because of amyotrophic lateral sclerosis, known as Lou Gehrig's Disease.

About midway through the marathon, as family members and friends were taking turns pushing the wheelchair, the front wheels broke, said his son, Richard Cook of San Diego.

"We found a shopping cart, removed the wheels to replace the broken wheels, and they were back in the marathon," Cook said.

The western end of the mall's parking lot was filled with music stages and tents containing equipment, clothing and food. Official Carlsbad Marathon T-shirts were popular sellers "after we lowered our prices to $10 because of the economy," said Pat Flanagan of San Marcos, an employee of event organizer In Motion Inc.

This year, the event benefited 17 charities through fundraising and awareness events.

Kim Matilla of Los Angeles was among a crowd of 20 wearing "Bring It!" T-shirts to match those of 40 runners who had traveled from Los Angeles and Bakersfield to race in memory of Dominic Ambriz.

"He was one of my closest friends," Matilla said of the native of Bakersfield, an avid marathon runner and toy maker for Mattel in Los Angeles.

Matilla said the words "bring it" had become Ambriz's slogan after undergoing his first rounds of chemotherapy for brain cancer before his death last year at the age of 28.

Lauren McGraw of Carlsbad was cheering for an international team of 60 runners from the United States, Costa Rica and the Republic of Kenya ---- all wearing "Heart for Africa" T-shirts.

McGraw said this is the second year the nonprofit organization entered the marathon to raise money for the poor in Africa.

"This year we're running for a shelter and a well that will go to Swaziland," McGraw said. "We've raised $26,000 just for this race. It's awesome."

Hot Chocolate

2009-01-26T11:06:00.000-08:00

I found this on the internet and liked it so it is here....

“A group of graduates, well established in their careers, were talking at a reunion and decided to go visit their old university professor, now retired.
During their visit, the conversation turned to complaints about stress in their work and lives.
Offering his guests hot chocolate, the professor went into the kitchen and returned with a large pot of hot chocolate and an assortment of cups — porcelain, glass, crystal, some plain looking, some expensive, some exquisite. He then told them all to help themselves to the hot chocolate. When they each had a cup of hot chocolate in hand, the professor said:

"Notice that all the nice looking, expensive cups were taken, leaving behind the plain and cheap ones. While it is normal for you to want only the best for yourselves, that is the source of your problems and stress."

"The cup that you're drinking from adds nothing to the quality of the hot chocolate. In most cases it is just more expensive and in some cases even hides what we drink."

"What all of you really wanted was hot chocolate, not the cup... but you consciously went for the BEST cups."
"And then you began eyeing each other's cups."
"Now consider this: Life is the hot chocolate; your job, money and position in society are the cups. They are just tools to hold and contain life."

"The cup you have does not define, nor change the quality of life you have. Sometimes, by concentrating only on the cup, we fail to enjoy the hot chocolate."

The happiest people don't need the best of everything.
They just make the best of everything that they have.
Live simply. Love generously. Care deeply. Speak kindly.
…and enjoy your hot chocolate!!

Roll For a Cure

2009-01-26T09:51:00.000-08:00

Sunday Morning we went to the Carlsbad Marathon. Atring got me up at 3:00 AM to get me ready for my part in the Roll For A Cure ALS fundraiser. She bundled me up and waited for Rick and Eileen who so graciously gave us a ride to the Marathon. We got there about 4:30 AM and I found Renee and the Van who was waiting for me. I jumped (not really) into the chair which had been designed with long handlebars on each side at the back for ease of pushing. That way to people can push the wheelchair for an extended period, or runners can push it more easily.
Nevertheless, Rick and Rudy accompanied by Peter, Nathan and of course Eileen, took me to the starting line of the Marathon. Tom Courtney, the director of the ALS Association for San Diego met me there. We listened to the announcer and a young lady sang the National Anthem, and then we were off. Rudy and Rick pushed and Peter and Nathan were standing by for their turn. They pushed me about a mile and a third to the ALS headquarters for this run. As soon as I got there I was met by 3 Carlsbad High School Cross Country athletes, who immediately grabbed me and started running. It was great. We hadn't gotten very far when lo and behold, the front left wheel on the wheelchair went flat. Or the rubber had separated from the spokes. I thought at first we were sunk. They managed to get me and the wheelchair back to the "headquarters." The brain trust of guys that were there started thinking. Lacking spare wheels (who would have thunk) they finally decided that shopping cart wheels should work. In less than ten minutes there were three shopping carts there. And in less than ten minutes they had two wheels off the shopping cart and put on the wheelchair. I was amazed, but I realized that years before I would have been there doing the same type thing.I was always in the middle of taking things apart and trying to put them back together.
Anyway, I was loaded in the wheelchair, loaded into the van and driven to where the next set of runners were to meet me. At about the 4 and a half mar on the course,a new set of runners from Santana had taken there places and running with me. We were moving at a good clip, averaging 9 minute miles. I was impressed with the runners. We went up hills, and down, passing other runners who were going steadily but more slowly. They ran until the 12 mile mark, when three more runners took there place, and they took off. At the the 16 mile mark or so, Rick was waiting to change places with me. I got out of the wheelchair and they transferred Rick from his wheelchair to the special race wheelchair. And off he went. I was transported back to headquarters. We waited for Rick and his group of pushers to come by. And sure enough he came in accompanied by kids from the Boys and Girls Club of East County. We switched chairs and I was being pushed by the same boys and girls to the finish line. At about 100 yards prior to the finish, I got out of the wheelchair, grabbed my cane and supported by my son Rick made for the finish. It was hard to walk cause I am losing my balance big time now. But I made it. The rousing welcome we got when we got there was truly amazing. I was proud to represent the ALS PALS in this marathon.
The boys finally got me home, and I was tired. The early morning rise, the excitement, and the exercise had worn me out. But Rick, Peter and Nathan spent the rest of the afternoon and evening with me. We talked about books, sports, beer, you name it, and we talked. It was great. I loved it.
What a fantastic day, and I owe it to my wonderful wife, super sons, the ALS Association and all the volunteers who give so unselfishly for the Association.
It was a super day!!!

Time Magazine Article Dec 2008

2009-01-24T11:27:00.001-08:00

Time Magazine Recognizes ALS Stem Cell Research as No. 1 Medical Breakthrough in 2008

Time magazine has named the creation of motor neurons using ordinary skins cells from people with ALS as the No. 1 medical breakthrough in 2008. The research was reported last summer by The ALS Association.

“Researchers at Harvard and Columbia reported a milestone experiment in July, using a new method — one that doesn't require embryos at all — to generate the first motor neurons from stem cells in two elderly women with Lou Gehrig's disease, or ALS,” wrote Alice Park in the magazines Top 10 Everything of 2008 issue published in December.

“The technique, developed by Kyoto University scientist Shinya Yamanaka in 2006, involves reprogramming a patient's ordinary skin cells to behave like stem cells, then coaxing them into the desired tissue-specific cells,” continued Park. “Using the motor neurons created from ALS patients, scientists can now study the progress of the disease as the affected cells develop, degenerate and die in a dish — something researchers could never do before for such slow-moving conditions. Once scientists understand the development of ALS, they may be able to create more effective treatments, or perhaps even a cure.”

Looking Back at 2008

2009-01-20T18:09:00.000-08:00

I was thinking today (I know that is hard for some to fathom) about the key things that happened to the people with ALS in 2008.
"Time" and "Newsweek" magazines both carried significant stories about ALS. Remember ALS is considered an orphan disease because so few of us get it. I don't necessarily agree with that, but I will let them say it. "Time" ran a story about how they are using stem cell research from people's skin, and trying to understand how ALS works. I think that is significant. If they can figure out how it works, what it does...they might be able to cure it. My hope and dream. At least one of them.
The VA announced on September 23 that ALS is now a service connected disease. That opens up the door to all the VA has to offer, which is very significant. Now to get through the red tape and paperwork the VA makes you fill out before getting benefits.
And finally Congress passed the ALS Registry act. What this does is gets everyone with ALS on a roll,and that way their is one central data point for them to collect information from the PALS.
I am thankful for all that. There is more to be done. But I am thankful......

Books I've Read 2009

2009-01-19T14:02:00.000-08:00

Relentless- DEAN KOONTS
This is a good thriller about a successful writer, who receives a scathing review and wants to confront his reviwer. However the reviewer has another agenda, that is to disrupt the writer's lfe. Good character development, especially for the vwriters son, Milo. I enjoyed the book even though it started really slow, and ended at a very fast pace.

The Patriot- Brad Thor
the premise is Mohammed had written another book for the Koran. This particular book espouses peace..not infantadas. The radical portions of Islam are trying to destroy it, while others are trying to publicize it. Thomas Jefferson is a key point in the book that is labeled a thriller. Enjoy.

Long Lost- Harlan Coben
I recommend this author to all. He writes easy to read, complex plots, great characters, who-dun-what books. And Long Lost is another good one. Myron Bolitar, sets out to answer a long lost love's call, and gets dragged into murder, kidnapping, and espionage on terrorists. Hard to believe, read it, you will like it.

The Last Legion- Ben Kane
An interesting historical novel that presents ancient Rome with four different outlooks. Twins born of a rape..Romulus is sold to gladiator school, his twin, Fabiola, sold to brothel. Their is the Etruscan, Tarquinius, who hates Rome cause they destroyed his people.
And finally Brenus the man from Gaul, who is captured by the Romans and becomes a gladiator, and the toast of Rome. A good book, but rather lengthy...but I liked it.

The Associate by John Grisham
Another titillating thriller from John Grisham. If you like legal tight roping and want to see more about big law companies and the way people make the law work for themselves. I liked it, you will to.

Your Heart Belongs To Me Dean Koontz

Koontz is one of favorite writers, I love his books, but I think he phoned this book in. Ryan, the main character, is a very active and well off software writer. However, he finds out he has health problems, and upon visiting the doctor, finds out he needs a new heart. Then the plot thickens..not necessarily best, but still a suspenseful outcome.

Outliers by Malcolm Gladwell

The story of Success, or so he says. The idea that success comes from more than just being driven. It depends on a lot of factors, like when you were born, your family, the history of the community, the city, the state, or even the country.
How the Beatles were helped by chance, Bill Gates was fortunate to be born in that particular year, how flying aircraft was dangerous if you came from another country.
How some of our most wealthy lawyers came to be that way. Interesting theses that he holds, makes you think. I did.

The Story of Edgar Sawtelle by David Wroblewski

Born mute, speaking only in sign, Edgar Sawtelle leads an idyllic life with his parents on their farm in remote northern Wisconsin. For generations, the Sawtelles have raised and trained a fictional breed of dog whose thoughtful companionship is epitomized by Almondine, Edgar's lifelong friend and ally. But with the unexpected return of Claude, Edgar's paternal uncle, turmoil consumes the Sawtelles' once peaceful home. When Edgar's father dies suddenly, Claude insinuates himself into the life of the farm--and into Edgar's mother's affections.

The Bodies Left Behind by Jeffrey Deaver

A spring night in a small town in Wisconsin. . . . A call to police emergency from a distant lake house is cut short. . . . A phone glitch or an aborted report of a crime? Off-duty deputy Brynn leaves her family's dinner table and drives up to deserted Lake Mondac to find out. She stumbles onto the scene of a heinous murder. . . . Before she can call for backup, though, she finds herself the next potential victim. Deprived of her phone, weapon and car, Brynn and an unlikely ally – a survivor of the carnage – can survive only by fleeing into the dense, deserted woods, on a desperate trek to safety and ultimately to the choice to fight back. The professional criminals, also strangers to this hostile setting, must forge a tense alliance too, in order to find and kill the two witnesses to the crime...

The Lucky One by Nicholas Sparks

Sparks main character in The Lucky One is ex-marine, Logan Thibault. Logan has served three tours of duty in Iraq and believes his survival is due to a lucky picture he found of an unknown woman. Once he completes his tour of duty, he walks from Colorado to Hampton, North Carolina in search of the woman in the picture.
Once he arrives in North Carolina, he takes a job at a dog training facility where he meets Nana, the elderly owner of the facility, Elizabeth, her granddaughter and her young son, Ben. Elizabeth, he discovers is the woman in his lucky picture.

The New Year

2009-01-09T09:37:00.000-08:00

With the advent of the year 2009, I figured it was time to tell all how I am doing. First off, I want to thank my number one caregiver...my wife Atring. Without her I would be not only lost, but stuck in a quagmire with no hope. Also, I want to thank my sons...Rick, Peter, Nathan, and Tito,...who are always there when I need them. And special thanks to Eileen, Leslie and Tenisha..for the encouraging looks and happy smiles.
Well my progression is moving faster. I am unable to talk with intelligible words. I sound like a caveman directing a sabre tooth tiger run. I do use the whiteboard a lot. When I run out of ink in my pens, I know I have been too mouthy. I like the computer that the ALS Association gave me to help with my communication, and it works...but it is heavy and hard to carry around and the battery has a short life..only about 6 hours.
My walking is getting worse...I cannot walk very well without a cane. I don't use the cane too much in the house..but I notice I have a hard time standing up from a sitting position. Also if I turn too fast, or don't pick up my right foot, I trip and fall down. I have bruised my butt, but no other injuries. I usually come up laughing at my clumsiness. Atring has the look of concern and shock. But so far no serious consequences.
I am reminded though of Catfish Hunter, a famous pitcher for the Oakland A's and New York Yankees. He had ALS, and died from a fall down the stairs. I can see how that happened. So I try to be careful.
I have a hard time walking up stairs, and even walking one step to a curb.
I find myself getting tired, if have been walking too much.
I do not eat much. I get 99.9% of my food through a tube to my stomach. It works well, and I never feel hungry. And I have stayed at a steady 130 lbs now for two months. That is a good thing. I still eat pudding and ice cream sometimes. I still like to drink bourbon and coke..but slowly..because I still choke very easily.
I like to munch on cookies and chips but each time I do, I choke.
I am especially bad when Atring cooks and I smell it, I go crazy. I want to eat also, but I know I will choke. I usually get a taste but that is about it.

My hand are staring to get weaker. I have a hard time buttoning my shirt, or zipping my zipper. I cannot open letters...my gripping and strength in my hand is very weak. I can still write, and type (duh!). But I can feel and see them getting weaker.

But honestly, I am living. I update the pages on Patients Like Me; I read emails about ALS from other Pals and Cals from the Yahoo site. I read books a lot, I love to read. I enjoy TV sports..football, basketball, and baseball. And I love talking to Atring. She is a blast.

Thanks you all for reading, leave me a message ok?
I pray to God that he will protect all of you.

Christmas 2008

2008-12-26T11:27:00.000-08:00

Well Christmas was wonderful. On the Sunday before, Pat and Beth had a Christmas Party at their house in Valley Center. It was great. Pat and I drank Seagrams Seven, and the Jack Daniels on the rocks. Poor old Pat passed out. I didn't feel anything. Except I was having a good time. The grandkids were their, and they had lots of people to play with. AJ was around me all the time. I gave her my camera, and she took a lot of pictures. She is so cool.

Christmas Eve, Rick and Eileen, Peter and Leslie went to mass with Atring and I at the Miramar Airmen's Chapel. It was a good mass, and then we came home, drank bourbon, opened presents. and had a great time. Peter and Leslie left about 2 am to go back to Los Angeles..they plan to see Leslie's parents Christmas Day. Tito was unable to make it. He said he was spending Christmas Eve with his sons.
Nathan was unable to make it Christmas Eve because he had to work, but they did show up on Chritmas Day. Driving in the rain from LA, Nathan and Tenisha arrived and we had a great time talking...

Later in the evening Rick took all of us to the movie. We saw "Marley and Me."
They were all bugging me after the movie asking "Did you cry?" Of course I did, (yet another curse of ALS).
But despite that we had a wonderful time. The best part of Christmas has been and always will be the fact that all my sons come home to see Atring and I. That is what I look forward to the most.
I love those boys so much!

TwoThings

2008-12-03T09:44:00.000-08:00

On the Monday before Thanksgiving my wife and I went to the Lady of Mount Carmel Catholic Church. We attended a special Mass being held by Father Fernando Suarez. He is a great Filipino priest who has the ability through Jesus to heal people. I am not saying he heals everybody, but I have seen and heard about his power. He cautions all that he is not the healer but only the conduit, that the healing comes from Jesus Christ to him. Nevertheless the Mass was good, he gave a great homily. And afterward everyone gathered so he might touch or pray over us, especially those with afflictions. I did, he touched me, but I felt no different. I still had ALS. But I did come away with a feeling that I am not so bad off as others. I pray to God daily to help me deal with my fate, but I know that God will do what he wants with me. That is OK with me. I want to post the prayer Father Fernando gave me.

Mary Mother of the Poor
Charitable Organization

Prayer For Healing
Lord, look upon me with eyes of mercy
May your Healing Spirit rest upon me.
It is through your power that I was created,
since you created me from nothing
You certainly recreated me.
Fill me with the healing power of Your Spirit
May your lifegiving powers flow into my every cell
of my body and into the depths of my soul.
Mend what is broken.
Cast out anything that should not be within me
Rebuild my brokeness
Restore my strength for service in Your Kingdom
Touch my mind with Your Wisdom
That my mouth may always proclaim Your praise.
Teach me to reach out to You in my need and help
me to lead others to You by my example.
Bring me health in body and spirit that I may serve
You with all my strength. AMEN

Thanksgiving was fantastic. All four of the boys were there and my two grandsons were also there. We went to Rick and Eileen's apartment. Everyone pitched in and made a fantastic dinner. It was all so delicious. I have a hard time eating, but I did manage to eat some food. The food and the family always makes this a very special holiday for me. After dinner we watched some football on TV, and then Atring and I went home. After a while, Peter and I sat down at the table and we had a great discussion. We talked about politics, sports, life in general, work, and many more subjects, but not once did we bring up ALS. I was frantically writing on the white board Leslie had gotten me( I have a hard time speaking intelligibly now).
What we did was not remarkable in any way, except it is the first time someone took time to talk to me about normal stuff and make me feel normal. I thank Peter for that. But I want more of that. The hardest part of this disease is it robs you of your abilities and you see and feel it happening. I am so conscious of the fact that I am losing ability to do the must mundane of things.
So the fact that Peter treated me so normal was pretty great.
Have a great day everyone...I will also.

Frustration

2008-11-11T14:47:00.000-08:00

Well today I have been more frustrated than ever. I find that I am losing control of my hands...that is there is no tactile feeling as I have an extremely hard time even buttoning my shirt or zipping my pants. I also have no strength left, as I found out when I tried to turn the car keys in the ignition and could not do it.
When I am sitting on the floor, I find it extremely hard to get up.
When I walk I use a cane and walk so slow...my right leg is almost inoperable.

Though I do get frustrated, I get so upset with myself...knowing the most mundane tasks that I used to perform are exceedingly difficult. But if I cannot do it, I ask my wife for assistance. And she is there to help.

I remember being so independent, even when I was young..telling my beloved Mother
"I can do it, Mommy, I can." Now I am not so sure.

I rearranged my room today, something that is hard but not very taxing as long as you plan ahead. I did that, but found out I did not have the strength to plug a electrical cord into an outlet. It was so frustrating. My son, Rick came over and we had the whole job done in less than 15 minutes.

Oh well..
I thank God for my life and my lovely wife and wonderful sons. And the ability to wake up each day enjoy his beautiful world. I am thankful I live in the best country in the world. Freedom abounds, and I can say I am responsible for my own life.
Have a wonderful day...until next time.

ALS Walk

2008-10-20T09:51:00.000-07:00

The ALS Walk to D'Feet Lou Gehrig's Disease took place yesterday Oct 19, 2008 at Mission Bay D'Anza Cove. It was terrific. A lot of people showed up, and I had about 21 people on my walk team "Chuck's Volunteers." It was a terrific 3K walk... I walked as much as I could, and rode a wheelchair the other time. My team was very supportive,and I think they had a good time also. Rick and Peter did a tremendous job of helping me raise money for the cause. The twins, Kaycie and Kellie were there, as well as Amy and her family, Norvell, Virgie and her husband, Irene, Rick and Eileen and his coworkers, Peter and Leslie and Beth and Pat. It was truly tremendous. I was tired but so very happy. Atring kept telling me to conserve my strength. But why not use it now in an activity I truly enjoy.
Thanks to all. A truly memorable event.

Helpless

2008-10-06T07:45:00.000-07:00

Atring and I took the train from San Diego to LA on Thursday. We had a good time. A lot more relaxing than driving the car in LA traffic. But it was riding the train that I realized some things. I am so afraid of being dependent and a burden on others. Atring is always feeding me via the tube, and looking after me. I am loosing my ability to walk slowly but surely, and I am loosing the tactile feeling in my hands slowly. I am increasingly unable to eat...every bite is an adventure. I love the taste of the food, but getting it down without choking is very difficult.

I do not want to be helpless... I have been so independent my whole life. Doing what I want to do, being the one who was there to help others. Now...I am unable though very willing to do so. We go to church every Sunday, and I sit there and pray as always for my family and friends....bu now I also ask for strength to get me through this ordeal.

On a happy note, while I was at Pete's place, Nathan came over and prepared a fantastic dinner of pork chops and sauerkraut, garlic mashed potatoes, and fried squash. Simply delicious. He is a great chef!

Got the Peg

2008-09-18T20:10:00.000-07:00

Atring took me to the doctor today to have a Peg inserted in my stomach. To say I was filled with trepidation is an understatement. But the hospital was very professional, and the doctor was good. I was out like a light...the surgery took about 15-20 minutes, and I was home before you know it. I am sore, but that is to be expected. I definitely recommend it to people who are not sure what to do. It isn't that bad, and it can only help you.
I read a lot of emails from other ALS patients, and some are against getting the Peg or the Vent. I am not sure why. But I know I want to live as long as possible and enjoy my wonderful family...avoid being a burden...and living in the beautiful world.
Thanks for reading...and when you get a chance....Tell Atring what a wonderful person she is..She really Is....

How I feel

2008-09-16T07:18:00.000-07:00

Today I go to the doctor to get a follow up on my Pneumonia. Atring insisted. I honestly do not know what would happen to me if it wasn't for her. She is the very best!!!
I feel so helpless sometimes. I cannot walk fast. I remember how people use to run to catch up with me. Now I can walk, but I feel the weakness in my legs, and use the cane to keep my balance, mostly. But the inability to talk intelligibly is the greatest drawback. I have a lot to say, and I am not stupid. The tendency for a person who hears one who cannot talk well is to shine him on. Trust me, I get so frustrated when I try to talk...and even the whiteboard I use does not convey the emotion I want...or the concern....or the thankfulness.

The other big problem...not so bad, but embarrassing, The laughing and crying. With ALS you somehow lose the ability to control your laugh or crying...your emotions. I find myself smiling at things that are very serious. And by the same token I find myself crying at the smallest heart rendering scene or thought. Oh well. So far I have kept that out of the public view.

Well,as I used to say years ago..I keep on trucking!!

Thai and Tracy

2008-09-15T22:18:00.000-07:00

Thai and Tracy came on Saturday to visit Atring and I. They brought their two sons Anthony (6 yrs) and Andy (2 Yrs). Both of the kids are great!! Thai told me they were shocked when they heard I had ALS. They said they didn't know what it was, but they looked it up on the internet.
I tried to tell them how I felt, but my voice has been declining rapidly for the last month, and they had a hard time understanding me. I treasured their visit. They both worked for me..or shall I say, we worked together at Qualcomm/Kyocera. Thai was the best technician I had ever me. He was very quick troubleshooter, and very accurate. I valued having him on my team. Tracy was also a great tech. But she was also a good leader, and I relied on her to get things done. She never failed me. They both promised they would see me again. I look forward to it.

On another note...Thursday, I am to go in and have a feeding tube inserted. I had gone to the doctor last week, and I evidently had a touch of pneumonia. I was precribed some medications, which seem to have worked. To say I am apprehensive about the operation is an understatement. But I really have no choice. I want to get this done before it becomes and emergency, and while I am still strong. However, I do not relish anyone cutting on me. Nevertheless, I have little choice. As Tracy told me before she left....Be Strong, Chuck.
OK..I will try my best!!

ALS Walk

2008-09-07T09:52:00.000-07:00

Well here I am again. Went to the ALS Association, and registered my team for the ALS Walk on Oct 19, 2008. I named my team Chuck's Volunteers.
I am always hesitant to ask for money for anything...I never was a very good salesman.
However..I do believe in this. Number one...the ALS Association does a lot of good. They are friends and problem solvers to those of us with ALS. Doctors tell us what to do, advise us, diagnose us. The ALS Association listens to us. They know what we are going through, and are always trying to help.
Also...raising money for a cure. I am not so sure they will find a cure in my lifetime. I am praying, but I am realistic. I know that research takes years. Oh well. But I do want to help someone else who might be going through what I am in the future.
Also..it gives me something positive to look forward too.
Anyway..we will try to raise money...

Family Reunion

2008-09-05T06:19:00.000-07:00

Well.
I have been pretty busy lately. My son Peter planned and executed a family reunion for us. He got me and my wife tickets to Little Rock where we were met by my brother Rod and his wonderful wife Gwen. He drove us back to Millington where he lives. He recently bought a house right by the high school we graduated from so many years ago. My brother Steve and his wonderful wife Peggy was there to greet us. He had come down from Evansville, Indiana. Later on that week my Aunt Phyllis and Aunt Sharon from Fort Wayne, Indiana visited. And then MY Aunt Carolyn and Uncle Chuck from Baltimore, Md. visited. It was all fantastic. My cousin Luann was also there. I always enjoy seeing her.
We had a great time that week. I have a lot of problems speaking due to theALS and BUlbar Onset..however Leslie bought me a small whiteboard that I used to convet brief thoughts when the words I said were unintelligible. Thanks a lot, it helped tremendously.
We had a big barbecue Friday night and earlier Friday a friend of mine from the Navy that I had known like forever, but had not seen in over 20 years came down from St Louis. Jose and his wife Karen were kind enough to spend the day with me. Jose and I talked for hours. He was truly the inspiration for my career in the Navy. He was like a brother, and the best friend I ever had.
Well later that night, my brother Rod, in his infinite wisdom, put some music on that we could dance to. It was great. I love to dance, and my wife will dance at the drop of a hat. My legs fwlt weak cause of the ALS...and I danced a first with trepidation...thinking a might fall and emabrass myself. But after that i Just danced...and sweated and had a great time.
The evening ended late...some of the visitors leaving to go home.
But I will never forget that wonderful week.
Rod, my bro, is a Nuclear Engineer, and graduate of The University of Tennessee. He is smart, very smart, dedicated and a wonderful brother. He is a dedicated Republican, to a fault...but that is ok. He is kind and generous and very loving. He was lucky when he found Gwen, but they are good for each other.
Steve, my other bro, is also a wonderful guy. He spent 8 years in the Navy after high school, and then went to work in the technical field of computers and data storage. He is very smart, dedicated, and a good worker. He has three wonderful children...Steve..a Sgt in the Marines, Kathy, a mother of three, and Chad...who is a newlywed about to become a father. I am lucky to know them all.
Take care..another post will come soon.

ALS

2008-08-20T08:23:00.000-07:00

Well, the reason for this blog is to submit my feelings and reactions to things in my life.
On June 11, 2008 I was diagnosed with ALS (Lou Gehrig's Disease) I have gone through the gambit of emotions, and am trying to deal with it. The physical limitations I have recently encountered coupled with the emotional outbreaks I have felt, have been one of my biggest challenges. My goal is to publish what I go through, and other things that have affected me in my life that have brought me to this point.
Have patience with me.
Later