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!!!
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!
Monday, January 26, 2009
Saturday, January 24, 2009
Time Magazine Article Dec 2008
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.”
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.”
Tuesday, January 20, 2009
Looking Back at 2008
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......
"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......
Monday, January 19, 2009
Books I've Read 2009
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.
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.
Friday, January 9, 2009
The New Year
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.
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.
Friday, December 26, 2008
Christmas 2008
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!
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!
Wednesday, December 3, 2008
TwoThings
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.
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.
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