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.
Carlsbad Marathon Roll For a Cure Jan 25, 2009
My Family- The greatest
The Cook Men at Thanksgiving
ALS Team Walk At Mission Bay October, 2008
Our ALS Walk was fantastic, the team was fantastic!
My Pogi Sons
Peter, Rick, Nathan, and Tito- the greatest sons a man could have!
The family
Having Fun during Fathers Day!!
Rod, Chuck and Steve in Millington Tennessee August 2008
The Cook boys at it again 2008. Rod and Steve are awesome brothers.
Chuck and Atring
Together Forever. The Love of my Life!
Tuesday, July 14, 2009
Friday, July 3, 2009
Katie Courics STORY
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.
"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.
Wednesday, May 20, 2009
Musings
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.
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.
Tuesday, May 12, 2009
Scared and Embarassed.
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.
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.
Tuesday, May 5, 2009
May Showers
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.
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.
Sunday, March 15, 2009
Life in the Hospital
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.
I am regaining strength back, but noticed I can no longer get up from a sitting position without help.
Monday, March 9, 2009
March Musings
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.
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.
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