mike-toronto
brandon-wiltonWednesday, November 21, 2007
PICS
SOME OF TEAM
GOING FROM L TO RSHANNON-FROM WILTON/DONNA-TORONTO/SUNEAL-TRINIDAD/MIKE-TORONTO-ALS LIKE ME/BRANDON-WILTON/DIANA AND HER MOM-TRINIDAD
THE GUY ON THE LEFT TOP ROW-HE SPEAKS AS MUCH ENGLISH AS A PIECE OF WOOD-SO, NO I DIDN'T GET HIS NAME
SORRY
PICS
THOUGHT WAS AMAZING-FROM MY WINDOW
THAT'S TONY-THE DOCTOR(CAN'T SPELL THE NAME) AND MAISY-SHE AND TONY ARE LIKE THE PATIENT CARE REPRESENTATIVESAWESOME IS WHAT THEY ARE
BRANDON FROM WILTON, CT-REMEMBER, HE WAS GUY POLE VAULTING. HE MOVES REALLY WELL-I GIVE HIM THE BEST CHANCE IN THE YEARS TO COME-TO BE ABLE TO FREE OF CRUTCHES-LIKE ANYONE ELSE-GREAT GUY!
BRANDON FROM WILTON, CT-REMEMBER, HE WAS GUY POLE VAULTING. HE MOVES REALLY WELL-I GIVE HIM THE BEST CHANCE IN THE YEARS TO COME-TO BE ABLE TO FREE OF CRUTCHES-LIKE ANYONE ELSE-GREAT GUY!
PICS
ME WORKING W/ MY LADY FRIENDS PLAYING CATCH AND RELEASE
PROOF I CAUGHT ONE!!!!!!!!!
THIS WAS TAKEN AT10AM
THIS WAS 12:30PMSNOW
FINALLY AT 11:45PM I'M UP FROM LYING DOWN
THEY SURPRISED ME AT 4PM TODAY. INSTEAD OF GETTING STEM CELLS THROUGH IV(I ONLY HAVE 1 IV OUT OF 6 STEM CELLS-SO 5 INJECTIONS AND 1 IV) THEY SAID IT WOULD BE AN INJECTION. WELL W/ IV YOU IMMEDIATELY GET UP WHEN THERE DONE. W/ THE INJECTIONS YOU HAVE TO LIE FLAT-NO PILLOW-FOR 6 HOURS. SO A WRENCH WAS THROWN INTO MY WRITING TIME.
I HAD SPASMS IN MY LEGS WHEN I FINALLY GOT UP-WHICH IS A GREAT SIGN. I WAS IN THE OPERATING ROOM W/ MIKE FROM TORONTO-HE HAS ALS TOO. HE SAID WHEN HE SAW ME GET WHEELED IN, "WOW A DOUBLE HEADER, HOPE IT'S A SWEEP FOR BOTH OF US". I KNEW WHAT HE MEANT. HE'S GREAT PEOPLE AND MOM AND HIS WIFE-DONNA-ARE FAST BECOMING GREAT FRIENDS. THEY LEAN ON EACH OTHER.
VERY INTERESTING INFO:
Q&A: Creating stem cells
Stem cells have huge potential
Stem cells are thought to hold huge potential for treating a wide range of disease and disability.
Scientists around the world are working on techniques to refine stem cell therapy.
The latest technique, nuclear reprogramming, promises to solve some of the trickiest practical and ethical issues.
What are stem cells?
Most adult cells in the body have a particular purpose which cannot be changed.
For instance, a liver cell is developed to perform specific functions, and cannot be transformed to suddenly take on the role of a heart cell.
Stem cells are different. They are still at an early stage of development, and retain the potential to turn into many different types of cell.
Why are they so useful?
When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialised function.
Scientists believe it should be possible to harness this ability to turn stem cells into a super "repair kit" for the body.
Theoretically, it should be possible to use stem cells to generate healthy tissue to replace that either damaged by trauma, or compromised by disease.
Among the conditions which scientists believe may eventually be treated by stem cell therapy are Parkinson's disease, Alzheimer's disease, ALS, heart disease, stroke, arthritis, diabetes, burns and spinal cord damage.
Stem cells may also provide a useful way to test the effects of experimental drugs.
It is also hoped that studying stem cells will provide vital clues about how the tissues of the body develop, and how disease takes hold.
Are there different types of stem cell?
Yes. Scientists believe the most useful stem cells come from the tissue of embyros.
This is because they are pluripotent - they have the ability to become virtually any type of cell within the body.
Stem cells are also found within adult organs. They have not taken on a final role, and have the potential to become any of the major specialised cell types within that organ.
Their role is to maintain the organ in a healthy state by repairing any damage it suffers.
It is thought their potential to become other types of cell is more limited than that of embryonic stem cells. But there is evidence that they are still relatively "plastic".
Can they be easily grown in the lab?
Large numbers of embryonic stem cells can be relatively easily grown in culture.
However, adult stem cells are rare in mature tissues and science is still working on ways to grow them in the lab in sufficient numbers.
This is an important distinction, as large numbers of cells are needed for stem cell replacement therapies.
Is the use of stem cells controversial?
Very. Campaigners are vehemently opposed to the use of embryonic stem cells.
These cells are typically taken from lab-created embryos that are just four or five days old, and are little more than a microscopic ball of cells.
However, opponents argue that all embryos, whether created in the lab or not, have the potential to go on to become a fully fledged human, and as such it is morally wrong to experiment on them.
They strongly advocate the use of stem cells from adult tissue.
What is nuclear reprogramming?
A new technique, in which cells isolated from skin tissue called fibroblasts are modified by inserting gene-controlling proteins.
This chemical cocktail causes the cells to be "reprogrammed" to take on the plastic quality of embryonic stem cells.
Why is the nuclear reprogramming an advance?
There are two big potential benefits. The current methods derive stem cells from from existing lab lines, but these cells are foreign to the body, and run the risk of rejection if used to repair or replace damaged or diseased tissue.
Nuclear reprogramming can potentially produce a supply of stem cells derived from a patient's own tissue - avoiding the issue of rejection of the cells.
Secondly, the technique does not require the creation of, or destruction of an embryo, and so is not ethically contentious.
Are there safety concerns?
Yes. Some researchers fear that it is possible that stem cell therapy could unwittingly pass viruses and other disease causing agents to people who receive cell transplants.
Some research has also raised the possibility that stem cells may turn cancerous.
Work also still needs to be done to refine the new technique. Similar results were achieved by two teams using a different combination of gene-controlling proteins.
In both cases the success rate in producing new stem cells was also low.
I HAD SPASMS IN MY LEGS WHEN I FINALLY GOT UP-WHICH IS A GREAT SIGN. I WAS IN THE OPERATING ROOM W/ MIKE FROM TORONTO-HE HAS ALS TOO. HE SAID WHEN HE SAW ME GET WHEELED IN, "WOW A DOUBLE HEADER, HOPE IT'S A SWEEP FOR BOTH OF US". I KNEW WHAT HE MEANT. HE'S GREAT PEOPLE AND MOM AND HIS WIFE-DONNA-ARE FAST BECOMING GREAT FRIENDS. THEY LEAN ON EACH OTHER.
VERY INTERESTING INFO:
Q&A: Creating stem cells
Stem cells have huge potential
Stem cells are thought to hold huge potential for treating a wide range of disease and disability.
Scientists around the world are working on techniques to refine stem cell therapy.
The latest technique, nuclear reprogramming, promises to solve some of the trickiest practical and ethical issues.
What are stem cells?
Most adult cells in the body have a particular purpose which cannot be changed.
For instance, a liver cell is developed to perform specific functions, and cannot be transformed to suddenly take on the role of a heart cell.
Stem cells are different. They are still at an early stage of development, and retain the potential to turn into many different types of cell.
Why are they so useful?
When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell with a more specialised function.
Scientists believe it should be possible to harness this ability to turn stem cells into a super "repair kit" for the body.
Theoretically, it should be possible to use stem cells to generate healthy tissue to replace that either damaged by trauma, or compromised by disease.
Among the conditions which scientists believe may eventually be treated by stem cell therapy are Parkinson's disease, Alzheimer's disease, ALS, heart disease, stroke, arthritis, diabetes, burns and spinal cord damage.
Stem cells may also provide a useful way to test the effects of experimental drugs.
It is also hoped that studying stem cells will provide vital clues about how the tissues of the body develop, and how disease takes hold.
Are there different types of stem cell?
Yes. Scientists believe the most useful stem cells come from the tissue of embyros.
This is because they are pluripotent - they have the ability to become virtually any type of cell within the body.
Stem cells are also found within adult organs. They have not taken on a final role, and have the potential to become any of the major specialised cell types within that organ.
Their role is to maintain the organ in a healthy state by repairing any damage it suffers.
It is thought their potential to become other types of cell is more limited than that of embryonic stem cells. But there is evidence that they are still relatively "plastic".
Can they be easily grown in the lab?
Large numbers of embryonic stem cells can be relatively easily grown in culture.
However, adult stem cells are rare in mature tissues and science is still working on ways to grow them in the lab in sufficient numbers.
This is an important distinction, as large numbers of cells are needed for stem cell replacement therapies.
Is the use of stem cells controversial?
Very. Campaigners are vehemently opposed to the use of embryonic stem cells.
These cells are typically taken from lab-created embryos that are just four or five days old, and are little more than a microscopic ball of cells.
However, opponents argue that all embryos, whether created in the lab or not, have the potential to go on to become a fully fledged human, and as such it is morally wrong to experiment on them.
They strongly advocate the use of stem cells from adult tissue.
What is nuclear reprogramming?
A new technique, in which cells isolated from skin tissue called fibroblasts are modified by inserting gene-controlling proteins.
This chemical cocktail causes the cells to be "reprogrammed" to take on the plastic quality of embryonic stem cells.
Why is the nuclear reprogramming an advance?
There are two big potential benefits. The current methods derive stem cells from from existing lab lines, but these cells are foreign to the body, and run the risk of rejection if used to repair or replace damaged or diseased tissue.
Nuclear reprogramming can potentially produce a supply of stem cells derived from a patient's own tissue - avoiding the issue of rejection of the cells.
Secondly, the technique does not require the creation of, or destruction of an embryo, and so is not ethically contentious.
Are there safety concerns?
Yes. Some researchers fear that it is possible that stem cell therapy could unwittingly pass viruses and other disease causing agents to people who receive cell transplants.
Some research has also raised the possibility that stem cells may turn cancerous.
Work also still needs to be done to refine the new technique. Similar results were achieved by two teams using a different combination of gene-controlling proteins.
In both cases the success rate in producing new stem cells was also low.
Tuesday, November 20, 2007
The Day
November 20, 2007
I woke up this morning 5:55am that’s 4:55pm your time.
Anyway, I was watching the movie-Bobby-last night and the DVD player started to act up. Mind you, it’s been doing it all week. So at 1:22am I had a fight w/ it and let’s just say the DVD lost and I woke up Gabe in the room n ext to mine. Let’s just say again (!!!!) my patience w/ the things we take for granted just crossed over into the red. The part of your brain that filters out rational thinking is lost when it comes to things like DVD players and the Internet-we take these for granted and that’s just the way it is.
The response coming via email, text and calls is making me FIGHT that much harder. KEEP THEM COMING. I received an email from a friend that I know through family and I also played with in the adult hockey league is Stamford. He wished me well and he told me, “every time I play hockey, I’m playing for you”. You can’t make this stuff up. I had to sit back and think for a second-I really miss lacing them up and playing-I really miss the smell of the ice. Thanks Kevin!!!!
Same day 6pm
I just got done w/ my I.V.-three hour’s everyday of NGF (nerve growth factor and nutrients). I had a great morning doing physical therapy but my afternoon occupational therapy was less than stellar. It (coordination) just was not a 100%-more like 75% and for me, that’s just unacceptable. During my I.V. -I was a little ornery! But it’s water under the bridge now. Gabe, from NY is leaving tomorrow morning. My sister arrives on Saturday!
Pics!
I woke up this morning 5:55am that’s 4:55pm your time.
Anyway, I was watching the movie-Bobby-last night and the DVD player started to act up. Mind you, it’s been doing it all week. So at 1:22am I had a fight w/ it and let’s just say the DVD lost and I woke up Gabe in the room n ext to mine. Let’s just say again (!!!!) my patience w/ the things we take for granted just crossed over into the red. The part of your brain that filters out rational thinking is lost when it comes to things like DVD players and the Internet-we take these for granted and that’s just the way it is.
The response coming via email, text and calls is making me FIGHT that much harder. KEEP THEM COMING. I received an email from a friend that I know through family and I also played with in the adult hockey league is Stamford. He wished me well and he told me, “every time I play hockey, I’m playing for you”. You can’t make this stuff up. I had to sit back and think for a second-I really miss lacing them up and playing-I really miss the smell of the ice. Thanks Kevin!!!!
Same day 6pm
I just got done w/ my I.V.-three hour’s everyday of NGF (nerve growth factor and nutrients). I had a great morning doing physical therapy but my afternoon occupational therapy was less than stellar. It (coordination) just was not a 100%-more like 75% and for me, that’s just unacceptable. During my I.V. -I was a little ornery! But it’s water under the bridge now. Gabe, from NY is leaving tomorrow morning. My sister arrives on Saturday!
Pics!
Sunday, November 18, 2007
Pics
Hey All,
Here's me trying to catch a ball while walking-When I saw these I was embarrassed! But I wanted to post them. It's weird-your brain is telling your body to move left or right and to catch the ball. But like said before-the signal is sent but sometimes it's received too late. It's so frustrating for me because I used to be so agile and so coordinated. And now I'm a little slow in the physical arena but my brain is as sharp as ever. Hard to describe!
Here they are:
WELL I AM HAVING A PROBLEM UPLOADING THE PICS-THERE IS A HUGE SNOW STORM HERE AND THE WIRELESS LAN THEY USE IS SUSPECT AT BEST! THOSE THAT KNOW ME, KNOW MY PATIENCE W/ ANYTHING BUT WOMEN IS SUSPECT AS WELL.
I ALMOST THREW THE COMPUTER OUT THE WINDOW.
TRY AGAIN LATER
SORRY
Here's me trying to catch a ball while walking-When I saw these I was embarrassed! But I wanted to post them. It's weird-your brain is telling your body to move left or right and to catch the ball. But like said before-the signal is sent but sometimes it's received too late. It's so frustrating for me because I used to be so agile and so coordinated. And now I'm a little slow in the physical arena but my brain is as sharp as ever. Hard to describe!
Here they are:
WELL I AM HAVING A PROBLEM UPLOADING THE PICS-THERE IS A HUGE SNOW STORM HERE AND THE WIRELESS LAN THEY USE IS SUSPECT AT BEST! THOSE THAT KNOW ME, KNOW MY PATIENCE W/ ANYTHING BUT WOMEN IS SUSPECT AS WELL.
I ALMOST THREW THE COMPUTER OUT THE WINDOW.
TRY AGAIN LATER
SORRY
Saturday, November 17, 2007
The internet is up-but at snails pace
So last night late they gave me a USB portable modem for DIAL-UP!! I have been a patient man but how long can one wait. To give you an idea how slow. Remember a 56K modem for dial-up well this connects at 230kbps. Not much faster.
Oh well I'm on and you should start seeing a lot more posts.
Have a great Sunday-relax, laugh, smile and hug someone.
Oh well I'm on and you should start seeing a lot more posts.
Have a great Sunday-relax, laugh, smile and hug someone.
Some ramblings of past few days!
The Internet was down so I wrote in word everyday and saved till now
November 15th, 2007
Hey All,
This morning I awoke to no internet (for the 2nd day in a row). No big deal but how many episodes of CSI, can one watch!!!!!!!!
My sister and few of my friends went to the Project Main St. Gala for ALS, last night in the city. They said and I quote, “it was amazing” and “it moved me”. I know they (project main st.) worked hard for a long time and I was both moved and honored that they asked me to be a part of it. From the feedback, it was a ton of fun and there were a lot of grand selections from the silent auctions.
A little bit about Project Main St.:
A family friend and an introduction led me to Project Main St. They are huge advocates in the fight to spread awareness and knowledge about ALS. Tim, there founder, had ALS and fought to see his vision come off the paper into mainstream America-where ALS is NOT widely known. And he succeeded! Very few of you can say, you knew someone or even thought of what ALS is (Lou Gehrig’s disease-I know we all knew who he was) before I had it or Project Main St. was born. And believe me; I would do anything NOT to have you think of ALS and me in the same sentence. But like I always say, “it is what it is”. I’m not angry anymore-that’s wasted energy. I have unfinished business with some people-in a great way-and you know who you are. So, NO, I am not going anywhere anytime soon!! Ha-ha.
www.projectmainst.org –check the website out
Here is a letter my sister and John M. read at the Gala:
Hello Everyone,
I hope you’re enjoying yourselves tonight!
I wanted to say a few words of thanks. As you may or may not know I am in china for a second round of stem cell treatments. It’s going well. But I wish I were there tonight to personally thank everyone.
I first want to thank Tim (the founder-He had ALS and a vision to spread the word and create awareness through Project Main St.-Tim left this world in April 2007 gracefully: knowing that his vision would be seen and heard) for having a vision and seeing it through-although I never met Tim, through my discussions w/ Mike, I got the pleasure of learning a little about his courage and the dedication he had to see Project Main St. as a real and inspiring charity for ALS. Tim-I am fighting the good fight in your honor.
To my family and friends for walking with me on this journey. Without them I could not have gotten this far and stayed so positive. There were times when it was much easier to give up then walk further. For that I’m forever in your debt. To the Cantore family for putting me in touch with Mike Rosen. That introduction led me here to Project Main St. And lastly, I want to thank Mike and the whole Project Main St. team. You all worked so hard for a long time to make this night special and I’m honored that you chose me to be your guest of honor.
ALS is not widely known in this world but by having charities like Project Main St. and other’s, the word is going to get out. This is a devastating disease that needs your help! Awareness is paramount and then with that, comes, the funding for research. Funding that research is the only obstacle in the path of a cure. Not enough attention is focused on Motor Neuron Disease’s. This event is a stepping stone to that awareness which will eventually lead to a cure. To that I’m thankful.-and remember- The man who removes a mountain begins by carrying away small stones.
Many Thanks Again,
Drew Schemera
November 16, 2007
Hey All,
Hope you’re well.
It snowed here in Shenyang-just about one inch and more is coming! It’s been like in the thirties and windy.
Shannon and Brandon from Wilton, CT left this morning. Hopefully we’ll see Shannon and the fam when we get home. Brandon lives in Utah. Email!
Gabriel from NY woke up with a fever so my mom cooked him some pasta! He’s alone so mom looks after him. He’s married w/2 kids. Newbies Mike and Donna are from Toronto-huge hockey fans!! Mike has ALS. His diagnosis- October 2006-a month after me. It started in his legs and then went to his hands. He speaks perfectly. He has no use of his hands and is in a wheelchair. So I have been asking this question a lot since I’ve met him. Would I rather talk than walk? I HAVEN’T A CLUE. So, I pose the question to you, would you rather walk then talk??
November 17th, 2007
We awoke to the internet being down once again. So I am writing this in word and saving till the internet is on and I can upload to my blog.
Well, yesterday in the morning I had acupuncture and then the bone marrow from the transplant was put back in me. See, when you get an injection in your spinal cord, they have to take as much out as they are going to putting in to equalize the pressure in the spinal cord. Well, let’s just say when he put the marrow back in, I have never felt the pressure like I did. The soreness after I’ve never experienced. I was in bed till 8pm. I’m so sore today but I have a Chinese massage (guys-it’s not that kind).
1pm Same day:
“How long before I get in-before it starts, before I begin-how long before you decide, before I know what it feels like-where too, where do I go-if you never try then you’ll never know-how long do I have to climb-up on this side of this mountain of mine”.
I’m bored before my occupational therapy at 1:30pm-its 12:30am your time. My mom is out with the ladies and I’m here listening to Tori Amos’s taxi ride on my ipod! In a million years I never thought that or this. Now its cold play and clocks is the song. Diana from Trinidad needs a hip replacement. That’s what I used to sell-hip and knee replacement implants. So I’m in the process of having her get in touch with one of old doctors that I sold to and I’m friends with. She wants to have it done here so I’m going to the skinny on what company’s implants they use here. I know my old company has products in china-I just don’t know where. Glad to be of service.
Off to OT.
2:30pm Same day
Now it’s Crosby, Stills and Nash-Southern Cross. It’s one of my top 5 songs of all time.
I’m feeling improvements in my hands and legs. They work me to a good sweat! And with my hands they do all these coordination exercises like: picking things up w/ 2 fingers and walking my fingers up a miniature stairs. I get three solid hours a day of therapy.
I got the two seasons of the show Prison Break-I’m addicted. It’s so far fetched but Michael Scolefield is so smooth. Now it’s Gerry Rafferty-Baker Street-good tune. As you can tell I’m highly bored. Off to the Chinese massage……
hve to upload pics tomorrow!
L,
Drew
November 15th, 2007
Hey All,
This morning I awoke to no internet (for the 2nd day in a row). No big deal but how many episodes of CSI, can one watch!!!!!!!!
My sister and few of my friends went to the Project Main St. Gala for ALS, last night in the city. They said and I quote, “it was amazing” and “it moved me”. I know they (project main st.) worked hard for a long time and I was both moved and honored that they asked me to be a part of it. From the feedback, it was a ton of fun and there were a lot of grand selections from the silent auctions.
A little bit about Project Main St.:
A family friend and an introduction led me to Project Main St. They are huge advocates in the fight to spread awareness and knowledge about ALS. Tim, there founder, had ALS and fought to see his vision come off the paper into mainstream America-where ALS is NOT widely known. And he succeeded! Very few of you can say, you knew someone or even thought of what ALS is (Lou Gehrig’s disease-I know we all knew who he was) before I had it or Project Main St. was born. And believe me; I would do anything NOT to have you think of ALS and me in the same sentence. But like I always say, “it is what it is”. I’m not angry anymore-that’s wasted energy. I have unfinished business with some people-in a great way-and you know who you are. So, NO, I am not going anywhere anytime soon!! Ha-ha.
www.projectmainst.org –check the website out
Here is a letter my sister and John M. read at the Gala:
Hello Everyone,
I hope you’re enjoying yourselves tonight!
I wanted to say a few words of thanks. As you may or may not know I am in china for a second round of stem cell treatments. It’s going well. But I wish I were there tonight to personally thank everyone.
I first want to thank Tim (the founder-He had ALS and a vision to spread the word and create awareness through Project Main St.-Tim left this world in April 2007 gracefully: knowing that his vision would be seen and heard) for having a vision and seeing it through-although I never met Tim, through my discussions w/ Mike, I got the pleasure of learning a little about his courage and the dedication he had to see Project Main St. as a real and inspiring charity for ALS. Tim-I am fighting the good fight in your honor.
To my family and friends for walking with me on this journey. Without them I could not have gotten this far and stayed so positive. There were times when it was much easier to give up then walk further. For that I’m forever in your debt. To the Cantore family for putting me in touch with Mike Rosen. That introduction led me here to Project Main St. And lastly, I want to thank Mike and the whole Project Main St. team. You all worked so hard for a long time to make this night special and I’m honored that you chose me to be your guest of honor.
ALS is not widely known in this world but by having charities like Project Main St. and other’s, the word is going to get out. This is a devastating disease that needs your help! Awareness is paramount and then with that, comes, the funding for research. Funding that research is the only obstacle in the path of a cure. Not enough attention is focused on Motor Neuron Disease’s. This event is a stepping stone to that awareness which will eventually lead to a cure. To that I’m thankful.-and remember- The man who removes a mountain begins by carrying away small stones.
Many Thanks Again,
Drew Schemera
November 16, 2007
Hey All,
Hope you’re well.
It snowed here in Shenyang-just about one inch and more is coming! It’s been like in the thirties and windy.
Shannon and Brandon from Wilton, CT left this morning. Hopefully we’ll see Shannon and the fam when we get home. Brandon lives in Utah. Email!
Gabriel from NY woke up with a fever so my mom cooked him some pasta! He’s alone so mom looks after him. He’s married w/2 kids. Newbies Mike and Donna are from Toronto-huge hockey fans!! Mike has ALS. His diagnosis- October 2006-a month after me. It started in his legs and then went to his hands. He speaks perfectly. He has no use of his hands and is in a wheelchair. So I have been asking this question a lot since I’ve met him. Would I rather talk than walk? I HAVEN’T A CLUE. So, I pose the question to you, would you rather walk then talk??
November 17th, 2007
We awoke to the internet being down once again. So I am writing this in word and saving till the internet is on and I can upload to my blog.
Well, yesterday in the morning I had acupuncture and then the bone marrow from the transplant was put back in me. See, when you get an injection in your spinal cord, they have to take as much out as they are going to putting in to equalize the pressure in the spinal cord. Well, let’s just say when he put the marrow back in, I have never felt the pressure like I did. The soreness after I’ve never experienced. I was in bed till 8pm. I’m so sore today but I have a Chinese massage (guys-it’s not that kind).
1pm Same day:
“How long before I get in-before it starts, before I begin-how long before you decide, before I know what it feels like-where too, where do I go-if you never try then you’ll never know-how long do I have to climb-up on this side of this mountain of mine”.
I’m bored before my occupational therapy at 1:30pm-its 12:30am your time. My mom is out with the ladies and I’m here listening to Tori Amos’s taxi ride on my ipod! In a million years I never thought that or this. Now its cold play and clocks is the song. Diana from Trinidad needs a hip replacement. That’s what I used to sell-hip and knee replacement implants. So I’m in the process of having her get in touch with one of old doctors that I sold to and I’m friends with. She wants to have it done here so I’m going to the skinny on what company’s implants they use here. I know my old company has products in china-I just don’t know where. Glad to be of service.
Off to OT.
2:30pm Same day
Now it’s Crosby, Stills and Nash-Southern Cross. It’s one of my top 5 songs of all time.
I’m feeling improvements in my hands and legs. They work me to a good sweat! And with my hands they do all these coordination exercises like: picking things up w/ 2 fingers and walking my fingers up a miniature stairs. I get three solid hours a day of therapy.
I got the two seasons of the show Prison Break-I’m addicted. It’s so far fetched but Michael Scolefield is so smooth. Now it’s Gerry Rafferty-Baker Street-good tune. As you can tell I’m highly bored. Off to the Chinese massage……
hve to upload pics tomorrow!
L,
Drew
Tuesday, November 13, 2007
A BAD HAIR DAY
I'M WEARING THE HAT BECAUSE....
FOLKS,
I'M GONNA POKE FUN AT MYSELF FOR FALLING ON A PERFECTLY WELL MADE CHAIR. HERE IS THE RESULT-4 STITCHES IN THE REAR OF MY HEAD. I WAS LAUGHING THE WHOLE TIME-THOUGHT I WOULD SHARE. AND NO LOCAL ANESTHETIC!
Pics
THEY ARE TEACHING ME THE CHINESE TWO-STEP
DIANA FROM TRINIDAD
I HAVE A WEDGY
ME AND THE DANCE CREW
me taking a snooze!!
me showing them something
them throwing me a ball-I used to have GREAT hands
this time I do catch it-promiseMonday, November 12, 2007
A Clarification
To the "anonymous blogger" who left this:
Date:Mon, 12 Nov 2007 13:42:56 -0800 (PST)
From:"Anonymous" Add to Address Book Add Mobile Alert
To:
schemera@yahoo.com
Subject:
[The Journey] New comment on Pics of Rehab.
Anonymous has left a new comment on your post "Pics of Rehab":
Just want to point out that ALS is one kind of motor neuron disease, which involves both upper and lower motor neurons. Posted by Anonymous to The Journey at November 12, 2007 4:42 PM
It was in response to the post where I talked about Phil & Barbara from Canada. She has what she and her doctors call "upper motor neuron disease". She has worse symptoms than me but the same symptoms. I said," it was like ALS". ALS is both upper and lower motor neuron-I live with it every god damn day. I saw another woman from Australia who "upper motor neuron disease" and she has the same symptoms as me and her doctors ruled out ALS. By no means was I implying that ALS is only upper or lower. It's both but no matter in conversations I've had with these two woman trying to convince otherwise is a grand challenge. Maybe there doctors are right or they don't want to face the fact there going to die. I don't know. I've accepted the fact that I'm facing a herculean task at best and I think with that acceptance comes a calmness. Hey, I'm livin' and fighting-would not have it any other way. The way other people's perceptions on this disease differ is there prerogative---whatever works for them.
So to the "anonymous" writer it's a matter of differentiating opinions when it comes to motor neuron disease. I've been to some of the best docs in the world and each one has said something different. So how the patient interprets the info or how the doctor explains the diagnoses differs. All I was doing was letting you know what friends I've made here have. Nothing more nothing less.
As for me the 2nd injection went well. I'm trying to get pics ready for you all. They will be up soon. New people from Port St. Lucie,FL. are here. He was in a car accident-Spinal cord injury and do to lack of oxygen he is blind(from the crash)- great guy. Mom is well-she is making friends with everyone and going shopping w/ her buddies.
Talk soon,
drew
Paul Tillich wrote, "It is man only who is able to face his death consciously; that belongs to his greatness and dignity."
Date:Mon, 12 Nov 2007 13:42:56 -0800 (PST)
From:"Anonymous"
To:
schemera@yahoo.com
Subject:
[The Journey] New comment on Pics of Rehab.
Anonymous has left a new comment on your post "Pics of Rehab":
Just want to point out that ALS is one kind of motor neuron disease, which involves both upper and lower motor neurons. Posted by Anonymous to The Journey at November 12, 2007 4:42 PM
It was in response to the post where I talked about Phil & Barbara from Canada. She has what she and her doctors call "upper motor neuron disease". She has worse symptoms than me but the same symptoms. I said," it was like ALS". ALS is both upper and lower motor neuron-I live with it every god damn day. I saw another woman from Australia who "upper motor neuron disease" and she has the same symptoms as me and her doctors ruled out ALS. By no means was I implying that ALS is only upper or lower. It's both but no matter in conversations I've had with these two woman trying to convince otherwise is a grand challenge. Maybe there doctors are right or they don't want to face the fact there going to die. I don't know. I've accepted the fact that I'm facing a herculean task at best and I think with that acceptance comes a calmness. Hey, I'm livin' and fighting-would not have it any other way. The way other people's perceptions on this disease differ is there prerogative---whatever works for them.
So to the "anonymous" writer it's a matter of differentiating opinions when it comes to motor neuron disease. I've been to some of the best docs in the world and each one has said something different. So how the patient interprets the info or how the doctor explains the diagnoses differs. All I was doing was letting you know what friends I've made here have. Nothing more nothing less.
As for me the 2nd injection went well. I'm trying to get pics ready for you all. They will be up soon. New people from Port St. Lucie,FL. are here. He was in a car accident-Spinal cord injury and do to lack of oxygen he is blind(from the crash)- great guy. Mom is well-she is making friends with everyone and going shopping w/ her buddies.
Talk soon,
drew
Paul Tillich wrote, "It is man only who is able to face his death consciously; that belongs to his greatness and dignity."
Saturday, November 10, 2007
Pics of Rehab
Hello,
Hope all is well!
I had my bone marrow taken out of my hip yesterday. The doctor was so precise-everything he told me while he was doing it was dead on. Except the pain. I chose to not have any anesthesia. I wanted to go through it without because I want to know how much it hurts to get this and every other procedure(EMG, blood gas, spinal tap, needles in my tongue etc.) done. Reason being-it will make me fight that much harder to not have to go through this again. At least that's what I'm telling myself or maybe it's my gigantic ego saying, "nothing is going to bring you down". Either way it was well worth the pain-I think-I don't want to jinx it just yet. My friend Boris from Maldovia had it when I was here in June and he had great results. I am expecting the same.
What they do is take the marrow out and then culture it into adult stem cells that are truly your own. It takes 7-10 days for them to mature. On the 16th I'm scheduled to have them put back in my spine. Otherwise things are going well. There is this great couple-Phil & Barbara from Prince Edward Island in Canada. Barbara has a similar disease to ALS-it's called motor neuron disease-the difference is she has had it for 7 years(gets progressively worse but not terminal). Gabriel from Legrange, NY(2hrs away)-spinal cord. Brandon from Wilton, CT-spinal cord. Dana from Trinidad-spinal cord. And a famous gymnast that was on the Chinese Olympic team-spinal cord-she was a quad now she has feeling in her legs. We all went to the Sheraton hotel and had an american feast. It was nice getting to know everyone outside of the hospital. And my mom found a shopping buddy in Shannon(Brandon's mom) from Wilton. Shenyang is nice and colorful. It's 300 miles northeast of Beijing. It has over 6 million people. All of the olympic soccer this summer is being played here. The doctors and nurses are truly grand and my therapists have gotten more out of me here. They have pushed me to the brink-which is how I like it.
The internet here is unstable-on one day and off the next but my blackberry is working all the time. So I'm connected. I can access this blog only when the internet is up but texts and emails I get all the time. I have recieved about 200 emails and texts since I've been here-THANKS AND I LOVE YA!
Talk Soon,
Drew
"The man who removes a mountain begins by carrying away small stones"
This is so true about me right now--I am moving a mountain(ALS) by carrying away small stones.
Hope all is well!
I had my bone marrow taken out of my hip yesterday. The doctor was so precise-everything he told me while he was doing it was dead on. Except the pain. I chose to not have any anesthesia. I wanted to go through it without because I want to know how much it hurts to get this and every other procedure(EMG, blood gas, spinal tap, needles in my tongue etc.) done. Reason being-it will make me fight that much harder to not have to go through this again. At least that's what I'm telling myself or maybe it's my gigantic ego saying, "nothing is going to bring you down". Either way it was well worth the pain-I think-I don't want to jinx it just yet. My friend Boris from Maldovia had it when I was here in June and he had great results. I am expecting the same.
What they do is take the marrow out and then culture it into adult stem cells that are truly your own. It takes 7-10 days for them to mature. On the 16th I'm scheduled to have them put back in my spine. Otherwise things are going well. There is this great couple-Phil & Barbara from Prince Edward Island in Canada. Barbara has a similar disease to ALS-it's called motor neuron disease-the difference is she has had it for 7 years(gets progressively worse but not terminal). Gabriel from Legrange, NY(2hrs away)-spinal cord. Brandon from Wilton, CT-spinal cord. Dana from Trinidad-spinal cord. And a famous gymnast that was on the Chinese Olympic team-spinal cord-she was a quad now she has feeling in her legs. We all went to the Sheraton hotel and had an american feast. It was nice getting to know everyone outside of the hospital. And my mom found a shopping buddy in Shannon(Brandon's mom) from Wilton. Shenyang is nice and colorful. It's 300 miles northeast of Beijing. It has over 6 million people. All of the olympic soccer this summer is being played here. The doctors and nurses are truly grand and my therapists have gotten more out of me here. They have pushed me to the brink-which is how I like it.
The internet here is unstable-on one day and off the next but my blackberry is working all the time. So I'm connected. I can access this blog only when the internet is up but texts and emails I get all the time. I have recieved about 200 emails and texts since I've been here-THANKS AND I LOVE YA!
Talk Soon,
Drew
"The man who removes a mountain begins by carrying away small stones"
This is so true about me right now--I am moving a mountain(ALS) by carrying away small stones.
Friday, November 9, 2007
Thursday, November 8, 2007
Gala Description-Project Main St.
Project Main St. cordially invites you to
An Evening of Cards and Cocktails
A Charity Texas Hold’em Poker Tournament & Cocktail Reception
Wednesday, November 14th, 2007
7:00PM - 11:30PM
Battery Gardens At The Harbor
Inside Battery Park
Opposite 17 State Street
The evening will also include a Silent Auction featuring a “Ladies Preference”
section with designer clothing, jewelry, makeup and much more.
Cocktail reception featuring premium open bar, passed hors d'oeuvres and
multiple food stations, will begin at 7:00PM and continues until 11:30PM.
Charity Texas Hold'em Poker Tournament begins promptly at 7:30PM and
runs until 11:30.
Please see www.projectmainst.org for poker tournament rules and additional
information.
An Evening of Cards and Cocktails
A Charity Texas Hold’em Poker Tournament & Cocktail Reception
Wednesday, November 14th, 2007
7:00PM - 11:30PM
Battery Gardens At The Harbor
Inside Battery Park
Opposite 17 State Street
The evening will also include a Silent Auction featuring a “Ladies Preference”
section with designer clothing, jewelry, makeup and much more.
Cocktail reception featuring premium open bar, passed hors d'oeuvres and
multiple food stations, will begin at 7:00PM and continues until 11:30PM.
Charity Texas Hold'em Poker Tournament begins promptly at 7:30PM and
runs until 11:30.
Please see www.projectmainst.org for poker tournament rules and additional
information.
A Charity Texas Hold’em Poker Tournament, Cocktail Reception & Silent Auction--(for men and woman)
Wednesday, November 14th, 2007 — 7:00PM - 11:30PM
Battery Gardens At The Harbor (get directions)Inside Battery Park, opposite 17 State Street
THIS IS A GREAT THING FOR PALS(PEOPLE W/ ALS)
CHECK THE WEBSITE OUT PLEASE
Wednesday, November 7, 2007
Hey All
The Internet was down the last 2 days. I have a ton of pics-they will post tomorrow. Had my first stemcell last night-feeling good.
THANKS FOR THE EMAILS AND BLOG COMMENTS-KEEP THEM COMING IT MEANS A LOT.
LOVE, D
"IT'S NOT HOW MANY BREATHS YOU TAKE IN YOUR LIFETIME, IT'S HOW MANY TIMES YOU'RE LEFT BREATHLESS"
THANKS FOR THE EMAILS AND BLOG COMMENTS-KEEP THEM COMING IT MEANS A LOT.
LOVE, D
"IT'S NOT HOW MANY BREATHS YOU TAKE IN YOUR LIFETIME, IT'S HOW MANY TIMES YOU'RE LEFT BREATHLESS"
Tuesday, November 6, 2007
Monday, November 5, 2007
WE MADE IT! AFTER 23HRS!!
Hey All,
Hope all is well!
After a long flight (15hrs) and then a 6hr lay over in Beijing, we finally got on our plane to Shenyang! The hospital is called the 463 Military Hospital. It is very nice with the same decor as Nanshan(the hospital in Shenzhen, China in June).
The people are great here, especially Tony. He is the coordinator-speaks fluent english. He is a godsend because as you all know, trying to articulate is difficult for me. He bridges that gap. I had my eval to see where I'm at physically. It was a shot in the arm. While physically I am strong my coordination is not. Therefore, I fall sometimes-but I ALWAYS get up. Down but not out-by a long shot.
Had my MRI-brain and neck-it was perfect. Also, had PT this morning. The therapist is awesome-she had me doing these groin exercises-it was funny-everyone laughed and it hurt like hell. I have my first injection for stem cells tomorrow the 7Th at 4pm(your time 3am Wednesday morning). My bone marrow transplant is next week-OUCH!!!!!
Went to wal mart-very different and the same. They have everything a wal mart back home would have but they have live fish you can choose from and they will gut it right there for you(pretty cool)
There is a mother and son from wilton-Shannon and Brandon. He is a SCI(spinal cord injury). 24 years old-he got injured pole vaulting. Great guy! Our moms are at Wal Mart as I am writing this.
Tons of photos and a video to follow!!!!!!!!!!!!!
Take care,
Love,
Drew
Someone sent this to me-so true
"Love yourself. Make peace with who you are and where you are at this moment in time. Listen to your heart. If you can't hear what it's saying in this noisy world, make time for yourself. Enjoy your own company. Let your mind wander among the stars. Try. take chances. Make mistakes. Life can be messy and confusing at times, but its also full of surprises. The next rock in your path might be a stepping stone. Be happy. When you don't have what you want, want what you have. Make do. That's a well kept secret of contentment. There aren't any shortcuts to tomorrow. You have to make your own way. To know where you're going is only part of it. You need to know where you've been, too. And if you ever get lost, don't worry. The people who love you will find you. Count on it. Life isn't days and years. It's what you do with time and with all the goodness and grace that's inside you. Make a beautiful life... The kind of life you deserve"
Hope all is well!
After a long flight (15hrs) and then a 6hr lay over in Beijing, we finally got on our plane to Shenyang! The hospital is called the 463 Military Hospital. It is very nice with the same decor as Nanshan(the hospital in Shenzhen, China in June).
The people are great here, especially Tony. He is the coordinator-speaks fluent english. He is a godsend because as you all know, trying to articulate is difficult for me. He bridges that gap. I had my eval to see where I'm at physically. It was a shot in the arm. While physically I am strong my coordination is not. Therefore, I fall sometimes-but I ALWAYS get up. Down but not out-by a long shot.
Had my MRI-brain and neck-it was perfect. Also, had PT this morning. The therapist is awesome-she had me doing these groin exercises-it was funny-everyone laughed and it hurt like hell. I have my first injection for stem cells tomorrow the 7Th at 4pm(your time 3am Wednesday morning). My bone marrow transplant is next week-OUCH!!!!!
Went to wal mart-very different and the same. They have everything a wal mart back home would have but they have live fish you can choose from and they will gut it right there for you(pretty cool)
There is a mother and son from wilton-Shannon and Brandon. He is a SCI(spinal cord injury). 24 years old-he got injured pole vaulting. Great guy! Our moms are at Wal Mart as I am writing this.
Tons of photos and a video to follow!!!!!!!!!!!!!
Take care,
Love,
Drew
Someone sent this to me-so true
"Love yourself. Make peace with who you are and where you are at this moment in time. Listen to your heart. If you can't hear what it's saying in this noisy world, make time for yourself. Enjoy your own company. Let your mind wander among the stars. Try. take chances. Make mistakes. Life can be messy and confusing at times, but its also full of surprises. The next rock in your path might be a stepping stone. Be happy. When you don't have what you want, want what you have. Make do. That's a well kept secret of contentment. There aren't any shortcuts to tomorrow. You have to make your own way. To know where you're going is only part of it. You need to know where you've been, too. And if you ever get lost, don't worry. The people who love you will find you. Count on it. Life isn't days and years. It's what you do with time and with all the goodness and grace that's inside you. Make a beautiful life... The kind of life you deserve"
Saturday, November 3, 2007
Friday, November 2, 2007
24hrs and counting
Hey Folks,
I am leaving! Tomorrow. I will have access to my blackberry for email-texts and phone calls. My # 914.621.1291. Feel free. And of course my blog-and I am bringing a DVD handy cam for streaming video on the blog.
I recently had lunch with a gentlemen from an ALS Charity Organization called "Project Main Street". Mike(whom I went to lunch with), is heavily involved and a great advocate on helping to fight my challenge. Checkout the website please.
http://www.projectmainst.org/
Take care and keep in touch
I am leaving! Tomorrow. I will have access to my blackberry for email-texts and phone calls. My # 914.621.1291. Feel free. And of course my blog-and I am bringing a DVD handy cam for streaming video on the blog.
I recently had lunch with a gentlemen from an ALS Charity Organization called "Project Main Street". Mike(whom I went to lunch with), is heavily involved and a great advocate on helping to fight my challenge. Checkout the website please.
http://www.projectmainst.org/
Take care and keep in touch
Wednesday, October 17, 2007
A STEP IN THE RIGHT DIRECTION-FINALLY!!!
Housee of Representatives Votes to Create National Registry for Lou Gehrig’s Disease!
(Live web feed)
http://web.alsa.org/site/R?i=8mJSQiEL94bdtMr4v3JqmQ
www.alsa.org
The House of Representatives took a major step in the fight against Lou Gehrig’s Disease on October 16 when it passed The ALS Registry Act (H.R. 2295) by an overwhelming 411-3 vote. The legislation would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941. “This is a tremendous victory for people with ALS and their families across the country,” said Steve Gibson, vice president of Government Relations for The ALS Association. “With today’s vote, the House of Representatives has made it clear that our nation is committed to finding a treatment and cure for ALS.” It has been more than 65 years since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years. “Unfortunately, families across the nation face the challenges and experience the suffering associated with ALS every single day,” said U.S. Representative Eliot Engel (D-NY), who introduced the ALS Registry Act and whose grandmother, Dora Engel, is believed to have succumbed to ALS. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.” The ALS Association worked closely with Congressman Engel and Congressman Lee Terry (R-NE) to introduce the ALS Registry Act. “Representatives Engel and Terry have led the fight for the ALS Registry Act,” said Gibson. “Their leadership in building support for bill, combined with the tremendous grassroots outreach of advocates from across the country, led to today’s historic bipartisan vote. People with ALS can be reassured that Congress has heard their message loud and clear.” Gibson noted that the bill also will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today.” The ALS Registry Act enjoyed broad bipartisan support leading up to the vote as more than 275 Representatives had cosponsored the legislation. During debate on the bill, Members of Congress praised the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. “I would like to thank the tireless efforts of The ALS Association and advocates in educating and advocating for a cure, which is what we all want,” said Representative Vito Fossella (R-NY). “We need to give scientists the tools they need to find the treatment and cure for ALS. The registry does just that.” Congresswoman Stephanie Herseth (D-SD) related the story of her visit with the Thorson family who had made the trip to Washington, DC for The ALS Association’s Advocacy Day in May 2007. “I was struck by their 12-year-old granddaughter, Elizabeth, who sees how the disease has affected her grandfather and sees her grandmother caring for him. Elizabeth wrote an essay for school entitled, ‘If I Had a Million Dollars, What Would I Buy?’ And Elizabeth dedicated her entire essay to buying supplies for her grandfather, funding research, and advocating to Members of Congress,” said Rep. Herseth. She continued, “By establishing a national ALS registry…we can help facilitate the efforts of so many across the country, like Elizabeth, like the scientists searching for a cure, who are working to conquer ALS and bring comfort to those afflicted with it.” Congressman Lee Terry, the lead Republican sponsor of the ALS Registry said “I am moved every year when I am visited by patients and their families in my Washington office. Despite the extremely challenging medical conditions faced by these patients, they make an extraordinary effort to travel to the Capitol and share their stories in the hope that we will soon find effective treatments and a potential cure so that no one like them will have to suffer in the future. The courage shown by ALS patients, as well as their families, is inspiring to me.” And it was the personal stories of people with ALS that also inspired Representative Patrick Murphy (D-PA), who spoke of Shelbie Oppenheimer, a person with ALS who testified before Congress during the ALS Association’s Advocacy Day in 2002. “This fight is personal for me, as my good friend Shelbie Oppenheimer, and her husband Jeff have long been advocates for those with ALS,” said Murphy. “Jeff and Shelbie, along with their daughter Isabel, are a constant inspiration to me and I join them in the fight to turn ALS from a disease to a memory.” Representative Engel concluded, “I wish to express my gratitude to the staff of the Centers for Disease Control and Prevention, and in particular to The ALS Association, who worked for months with me and my staff to improve the bill we had introduced in the previous 109th Congress.” “I urge swift passage of the ALS Registry Act, H.R. 2295, today.” Senate Majority Leader Harry Reid (D-NV) has introduced companion legislation (S. 1382) in the US Senate where a bipartisan majority of 58 Senators have cosponsored the bill. “We hope that the Senate will follow the House’s lead and pass the ALS Registry Act as soon as possible,” said The ALS Association’s Gibson. “People with ALS don’t have time to wait.” The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front research, patient and community services, public education, and advocacy to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Video footage of Congressman Eliot Engel’s remarks on the House floor is available here <http://web.alsa.org/site/R?i=8mJSQiEL94bdtMr4v3JqmQ..> and the text of the debate that preceded the vote is available here <http://web.alsa.org/site/R?i=0870VHV2o_B4xlcUlgbWDg..> . <http://web.alsa.org/site/PixelServer?j=h1g3M8br-6XFj_fRDvvbwA..>
(Live web feed)
http://web.alsa.org/site/R?i=8mJSQiEL94bdtMr4v3JqmQ
www.alsa.org
The House of Representatives took a major step in the fight against Lou Gehrig’s Disease on October 16 when it passed The ALS Registry Act (H.R. 2295) by an overwhelming 411-3 vote. The legislation would establish the first ever national patient registry of people with Lou Gehrig’s Disease, or amyotrophic lateral sclerosis, to be administered by the Centers for Disease Control and Prevention. The registry would collect information leading to the cause, treatment and cure of the deadly neurological disease that took the life of baseball legend Lou Gehrig in 1941. “This is a tremendous victory for people with ALS and their families across the country,” said Steve Gibson, vice president of Government Relations for The ALS Association. “With today’s vote, the House of Representatives has made it clear that our nation is committed to finding a treatment and cure for ALS.” It has been more than 65 years since Lou Gehrig lost his life to ALS. Although more is known about the disease today, there is no known cause or means of prevention, nor is there an effective treatment or a cure. In fact, the prognosis for a person living with ALS today is nearly the same as it was for Gehrig: death in an average of two to five years. “Unfortunately, families across the nation face the challenges and experience the suffering associated with ALS every single day,” said U.S. Representative Eliot Engel (D-NY), who introduced the ALS Registry Act and whose grandmother, Dora Engel, is believed to have succumbed to ALS. “The establishment of a registry will bring new hope to thousands of patients and their families that ALS will no longer be a death sentence.” The ALS Association worked closely with Congressman Engel and Congressman Lee Terry (R-NE) to introduce the ALS Registry Act. “Representatives Engel and Terry have led the fight for the ALS Registry Act,” said Gibson. “Their leadership in building support for bill, combined with the tremendous grassroots outreach of advocates from across the country, led to today’s historic bipartisan vote. People with ALS can be reassured that Congress has heard their message loud and clear.” Gibson noted that the bill also will benefit our nation’s military veterans. “Although ALS can strike anyone, regardless of their age, gender, race or nationality, recent studies have shown that the disease strikes military veterans at approximately double the rate as the general population. A national registry will enable us to learn why our veterans are at greater risk of ALS so that we can take action to help them and to protect the lives of our heroes serving in the military today.” The ALS Registry Act enjoyed broad bipartisan support leading up to the vote as more than 275 Representatives had cosponsored the legislation. During debate on the bill, Members of Congress praised the work of The ALS Association and the advocates who have shared their stories and put a face on the disease. “I would like to thank the tireless efforts of The ALS Association and advocates in educating and advocating for a cure, which is what we all want,” said Representative Vito Fossella (R-NY). “We need to give scientists the tools they need to find the treatment and cure for ALS. The registry does just that.” Congresswoman Stephanie Herseth (D-SD) related the story of her visit with the Thorson family who had made the trip to Washington, DC for The ALS Association’s Advocacy Day in May 2007. “I was struck by their 12-year-old granddaughter, Elizabeth, who sees how the disease has affected her grandfather and sees her grandmother caring for him. Elizabeth wrote an essay for school entitled, ‘If I Had a Million Dollars, What Would I Buy?’ And Elizabeth dedicated her entire essay to buying supplies for her grandfather, funding research, and advocating to Members of Congress,” said Rep. Herseth. She continued, “By establishing a national ALS registry…we can help facilitate the efforts of so many across the country, like Elizabeth, like the scientists searching for a cure, who are working to conquer ALS and bring comfort to those afflicted with it.” Congressman Lee Terry, the lead Republican sponsor of the ALS Registry said “I am moved every year when I am visited by patients and their families in my Washington office. Despite the extremely challenging medical conditions faced by these patients, they make an extraordinary effort to travel to the Capitol and share their stories in the hope that we will soon find effective treatments and a potential cure so that no one like them will have to suffer in the future. The courage shown by ALS patients, as well as their families, is inspiring to me.” And it was the personal stories of people with ALS that also inspired Representative Patrick Murphy (D-PA), who spoke of Shelbie Oppenheimer, a person with ALS who testified before Congress during the ALS Association’s Advocacy Day in 2002. “This fight is personal for me, as my good friend Shelbie Oppenheimer, and her husband Jeff have long been advocates for those with ALS,” said Murphy. “Jeff and Shelbie, along with their daughter Isabel, are a constant inspiration to me and I join them in the fight to turn ALS from a disease to a memory.” Representative Engel concluded, “I wish to express my gratitude to the staff of the Centers for Disease Control and Prevention, and in particular to The ALS Association, who worked for months with me and my staff to improve the bill we had introduced in the previous 109th Congress.” “I urge swift passage of the ALS Registry Act, H.R. 2295, today.” Senate Majority Leader Harry Reid (D-NV) has introduced companion legislation (S. 1382) in the US Senate where a bipartisan majority of 58 Senators have cosponsored the bill. “We hope that the Senate will follow the House’s lead and pass the ALS Registry Act as soon as possible,” said The ALS Association’s Gibson. “People with ALS don’t have time to wait.” The Association is the only national not-for-profit health agency dedicated solely to the fight against ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s Disease). The ALS Association is fighting on every front research, patient and community services, public education, and advocacy to improve living with ALS. The mission of The Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. Video footage of Congressman Eliot Engel’s remarks on the House floor is available here <http://web.alsa.org/site/R?i=8mJSQiEL94bdtMr4v3JqmQ..> and the text of the debate that preceded the vote is available here <http://web.alsa.org/site/R?i=0870VHV2o_B4xlcUlgbWDg..> . <http://web.alsa.org/site/PixelServer?j=h1g3M8br-6XFj_fRDvvbwA..>
Saturday, October 13, 2007
Sad News
Here is a couple of photos of my friends-Claudio and Cinzia
Hey All,
I received an email from my friend Cinzia from Switzerland informing me of the passing of my dear friend Claudio. He was suffering from ALS but he died from a tired heart(heart attack). When I met him for the first time I had no idea he had the same thing as me. But I had a feeling. Well, when I found out he had ALS I started to well up and I had this feeling of overwhelming fear. I pictured in my head, this is how I'm going to end up. But that's the harsh reality of what this F%#@IN disease does. Claudio was a real fighter(4 long years he battled)-when diagnosed, he was 34 and he passed at 38. Before that Claudio was healthy in every way. He received stem cells 4 different times with improvements! Hope is just around the corner w/ stem cell therapy! That is why I am going back! Again.-WHATEVER IT TAKES!
Here the email I received from my friend Cinzia:
Hello dear Drew, how are you? Did you improve since you went home from China? I Hope yes. Tell me everything please! Sometime I look pictures with you. It makes me happy. Something sad happened here. Claudio is not in this world from September 3, the day he decided to fly to the sky near the Angels. He is an important and beautiful Angel right now and he will see and give us a lot of love from his comfortable cloud. It wasn't his sickness, but his very tired heart. He will make you stronger, to tell everyone that stemcells are the future of your life and the life of everyone who is sick. I hope you can understand my english. The picture is a present for you and for your sister. Say hallo to her. So , I hug and I kiss you so strong and please, be in touch with me again. Love, Cinzia
Monday, October 8, 2007
Daily Wisdom from a Friend
Never deny a diagnosis, but do deny the negative verdict that might go with it.
-Norman Cousins
-Norman Cousins
Thursday, October 4, 2007
A recent photo
I'M A NATURAL.....This cute baby is the newest addition to our family-Andrew(love that name) Charles Schemera(it's my cousin's Richard and Barbara's baby)--click on the photo to enlarge it--
Tuesday, October 2, 2007
Question
I recieved this comment and I don't know who sent it! Can anyone tell me-just email me
schemera@yahoo.com
Anonymous said...
I Love You.
September 21, 2007 2:01 PM
schemera@yahoo.com
Anonymous said...
I Love You.
September 21, 2007 2:01 PM
Thought and results
Hey there,
Hope you are well. 33 days and counting to Beijing!!
I slept at the Yale Sleep Clinic on Sunday. It was a test to measure how much oxygen I am getting to my blood when I am asleep. When I am awake I am very in-tune to how I breathe. But when I am asleep I rely on my brain to send down the signal to my diaphragm to expand and contract, essentially to breathe but as you know know with my challenge the signal is sent but there could be no one home to receive it! My point being, I do not expand or contract enough to get right amount of air when sleeping they(doctors) thought. The test came out normal! You should have seen me-I had electrodes pinned to every part of my body and they watched through a camera my every move-and I DON'T snore(some-they beg to differ!!).
Here is an interesting article-it's long but please read it!
Why Michael J. Fox Is Wrong
Date: Mon Oct 1, 2007 7:26 pm ((PDT))
Why Michael J. Fox Is Wrong
The fast approaching of the mid term elections bring all the special
interest champions out into the limelight. Advocates for special
interests ranging from the environment to animal rights all view the
political process as a means to advance their causes. Chief among these
media darlings dedicated to a social agenda is Michael J. Fox.
Mr. Fox has enabled scientists to carry out some incredible research in
regards to Parkinson?s disease (PD). The Michael J. Fox Foundation has
awarded more the seventy million dollars in scientific grants involving
more than two hundred research projects in eighteen countries.
Among the wide array of projects supported by the Fox Foundation is a
gene therapy that injects a virus with a gene produced by the team of
Dr. Raymond Bartus into the brain. The theory behind this study is hat
seeding the malfunctioning area of the brain will cause it to start
producing Dopamine. Dopamine is a hormone like neurotransmitter.
The Cleveland Clinics: Glossary of Parkinson’s disease Terms
defines Dopamine as;
A chemical produced by the brain; it assists in the effective
transmission of messages from one nerve cell to the next. People with
Parkinson’s have decreased amounts of the chemical in the basal
ganglia and substantia nigra, two structures located deep in the brain.
Dopamine coordinates the actions of movement, balance, and walking.
Another study at the University of Florida supported by the Fox
Foundation is led by Dr. Christine Sapienza. This group of scientist are
working on curing a symptom of PD, that of difficulty swallowing. This
may seem trivial at first blush until you learn that the leading cause
of death in a PWP (Person with Parkinson’s) is aspiration
pneumonia. Water leaking into the airway causing infection, pneumonia
and death.
In Beijing China compounds found in green tea are being study in the
event that they may slow the progression of PD. Again supported
financially by the Fox Foundation.
Parkinson?s disease is a very highly misunderstood disease. There are an
estimated one and a half million people in the United States suffering
from PD. It is a degenerative neurological disorder that affects the
Dopamine producing area of the brain. This loss of Dopamine can cause at
rest tremors, a slowness of movement, rigidity of trunk and limbs and
impaired balance. These are only the main symptoms of PD with dozens of
secondary symptoms. PD is a quietly devastating disease.
Mr. Fox has joined the political process to promote Stem Cell research,
specifically Embryonic Stem Cell Research (ESCR). Mr. Fox and our media
have bought into the claims of certain members of the scientific
community that embryonic stem cells are the great panacea, the magic
bullet, and a cure all solution. Fact is not a single therapy has been
developed using Embryonic Stem Cells.
Diana Kapp in The $3 Billion Cell Job states [1] ?Not a single embryonic
stem cell has ever been tested in a human being, for any disease.?
Read what she says carefully, not only are their no therapies using
ESCR, but no research project has progressed to the stage of testing on
humans. This after twenty five years of research and testing on
embryonic stem cells obtained from mice.
Stuart Newman, Professor of Cell Biology and Anatomy, New York Medical
College wrote [2] ?there had been essentially no progress in curing or
even palliating disabling conditions for which mouse ?models? existed,
such as diabetes, spinal cord injury, Parkinson?s and so forth.?
No progress towards a cure for diabetes, spinal cord injury or PD, not
even to relieving the symptoms of these tragic disabling conditions.
Neither a single cure nor relief of the any of the symptoms associated
with these diseases.
A leading advocate of ESCR when asked how long it will take for
embryonic stem cell based therapies to be ready, gives the following
answer [3] ?My answer is five years,? he said. ?It’s the same
thing as saying I have no idea.?
That is about as honest an answer as you are likely to find in the
debate over ESCR. As honest as it is telling, no one really can say
definitively that ESCR will produce a cure in the next several decades,
or even if one can be produced.
Quoting Mr. Fox in an interview with Katie Couric on April 16 of 2006
?not all politicians are on the same page as scientists.
Parkinson’s experts believe in stem cell research as a promising
prospect for a cure. But the source of those cells ? human embryos
â€" touches a sensitive nerve in the nation’s capitol.
Either Mr. Fox is not being entirely truthful or he does not fully
comprehend the claims he makes in the above statement. He implies that
all scientists are in agreement with his belief that ESCR is the next
great cure all. That politicians, specifically those in Washington are
to be blamed for its lack of progress.
A case against this point of view can be made from a letter written
during the 2004 Presidential election by fifty-seven noted research
scientists and physicians. The signatories coming from such renowned
research facilities as the Mayo Clinic, Georgetown Medical School ,
Harvard Medical School, and the National Cancer Institute. In this
letter written to the Kerry - Edwards campaign regarding their
statements on ESCR; these same scientists accuse the campaign of being
irresponsible, dangerous and misleading.
Third, the statements you have made regarding the purported medical
applications of embryonic stem cells reach far beyond any credible
evidence, ignoring the limited state of our knowledge about embryonic
stem cells and the advances in other areas of research that may render
use of these cells unnecessary for many applications. To make such
exaggerated claims, at this stage of our knowledge, is not only
scientifically irresponsible ? it is deceptive and cruel to millions of
patients and their families who hope desperately for cures and have come
to rely on the scientific community for accurate information. (Ad-hoc
group of Scientists Letter to the Kerry ? Edwards Campaign October 27th
2004)
After chastising the political campaign of Kerry-Edwards the letter
continues on to describe how research and treatment of non-controversial
adult stem cells have already treated and cured thousands of dozens of
diseases.
Non-embryonic stem cells have been discovered in many unexpected tissues
? in blood, nerve, fat, skin, muscle, umbilical cord blood, placenta,
even dental pulp ? and dozens of studies indicate that they are far more
versatile than once thought. Use of these cells poses no serious ethical
problem, and may avoid all problems of tissue rejection if stem cells
can be obtained from a patient for use in that same patient. Clinical
use of non-embryonic stem cells has grown greatly in recent years. In
contrast to embryonic stem cells, adult stem cells are in established or
experimental use to treat human patients with several dozen conditions,
according to the National Institutes of Health and the National Marrow
Donor Program (Cong. Record, September 9, 2004, pages H6956-7). They
have been or are being assessed in human trials for treatment of spinal
cord injury, Parkinson?s disease, stroke, cardiac damage, multiple
sclerosis, and so on.
Adult Stem Cells are plentiful, easy to obtain and come with out the
moral, ethical and medical baggage of Embryonic Stem Cells. They have
and are being used to treat ?several dozen conditions?, currently.
Again we see that the medically more advanced adult stem cells are a
superior option to those taken at an embryonic state. This is a
scientific fact. The later in the gestation period a cell has achieved
the more stable it becomes. Cells taken at the earliest or blastocyst
stage (5 to 6 days) are highly volatile, difficult to work with and
likely to cause tumors. Later in the development cycle the cell
stabilizes and becomes the type of cell it was designed to be.
Mr. Fox is also wrong in his perception of what pro life is and what is
not. Again a quote from the Katie Couric interview, Mr. Fox in response
to a question about the ?millions of Americans who find the concept of
destroying embryos immoral? :
I would say that, from my opinion, it’s an amazing pro-life thing
to do to take those cells and to endeavor to improve the lives of
millions and billions of people that are alive now and will be alive in
the future by coming up with curesâ€"and treatments for diseases.
His concept of pro life and mine vary greatly. The basic premise to his
answer is that of the pro abortion movement. The idea that lives at
different stages of development are of unequal value and that some
stages are of little to no value. Another way of saying the same thing
would be that the unborn lack some thing that the new born has acquired.
This is the slippery slope we find ourselves on today, and have been
treading ever downward since Roe v. Wade.
All life, the stage of development not withstanding is valuable in the
eyes of our Creator. The Bible teaches that men and women were created
in the image of God
So God created man in his own image, in the image of God he created him;
male and female he created them. Genesis 1:27 (NIV)
Combined with the instruction of the 5th commandment delivered to Moses
in Exodus 20:13 “You shall not murder. (NIV)
This makes it imperative that we are to protect life, from its very
beginning to its natural end. Life is sacred gift. This truth is
unrelated to situation or circumstance. Destroying a human embryo is
destroying a living human being. Any middle school biology student know
that life beings when the cell divides. ESCR destroys a human being.
Michael J. Fox knows this. The scientist proponents of ESCR know this.
They have their own reasons for pushing their agenda.
As a fellow PD patient myself, my outlook on life and its sanctity are
very different from that of Mr. Fox. I have learned to look for the
blessing in all things, even PD. It is the difference between a post
modern worldview and a Christian worldview. When one learns that God is
sovereign and allows nothing that can not be used to His glory to
happen, it gives life a new meaning.
Stem Cell Research can be beneficial to human kind when done properly.
It can be extremely destructive when done outside the bounds of
propriety. We must put aside our personal agendas and educate one
another to the facts. Stem Cell Research on Adult stem cells provides
great promise of even more therapies and treatments in the near future.
In conclusion I want to address Mr. Fox directly by saying, Michael you
have done great things with your foundation, all in your own strength.
However you will never find true happiness or peace until you come to
accept Jesus Christ as the Lord of your life. It staggers my imagination
what you could accomplish were you only acting in His will and not your
own. As the Apostle Paul writing from a Roman prison cell explains it;
I know how to be brought low, and I know how to abound. In any and every
circumstance, I have learned the secret of facing plenty and hunger,
abundance and need. I can do all things through him who strengthens me.
Philippians 4:12-13 (ESV)
I will pray that you God gives you Michael the wisdom to discern the
truth regarding the destruction of embryos and the sanctity of human
life. That he will soften your heart and that you will choose to let Him
in. That you will continue to do His work, His way.
All in the name of Jesus, Amen
Hope you are well. 33 days and counting to Beijing!!
I slept at the Yale Sleep Clinic on Sunday. It was a test to measure how much oxygen I am getting to my blood when I am asleep. When I am awake I am very in-tune to how I breathe. But when I am asleep I rely on my brain to send down the signal to my diaphragm to expand and contract, essentially to breathe but as you know know with my challenge the signal is sent but there could be no one home to receive it! My point being, I do not expand or contract enough to get right amount of air when sleeping they(doctors) thought. The test came out normal! You should have seen me-I had electrodes pinned to every part of my body and they watched through a camera my every move-and I DON'T snore(some-they beg to differ!!).
Here is an interesting article-it's long but please read it!
Why Michael J. Fox Is Wrong
Date: Mon Oct 1, 2007 7:26 pm ((PDT))
Why Michael J. Fox Is Wrong
The fast approaching of the mid term elections bring all the special
interest champions out into the limelight. Advocates for special
interests ranging from the environment to animal rights all view the
political process as a means to advance their causes. Chief among these
media darlings dedicated to a social agenda is Michael J. Fox.
Mr. Fox has enabled scientists to carry out some incredible research in
regards to Parkinson?s disease (PD). The Michael J. Fox Foundation has
awarded more the seventy million dollars in scientific grants involving
more than two hundred research projects in eighteen countries.
Among the wide array of projects supported by the Fox Foundation is a
gene therapy that injects a virus with a gene produced by the team of
Dr. Raymond Bartus into the brain. The theory behind this study is hat
seeding the malfunctioning area of the brain will cause it to start
producing Dopamine. Dopamine is a hormone like neurotransmitter.
The Cleveland Clinics: Glossary of Parkinson’s disease Terms
defines Dopamine as;
A chemical produced by the brain; it assists in the effective
transmission of messages from one nerve cell to the next. People with
Parkinson’s have decreased amounts of the chemical in the basal
ganglia and substantia nigra, two structures located deep in the brain.
Dopamine coordinates the actions of movement, balance, and walking.
Another study at the University of Florida supported by the Fox
Foundation is led by Dr. Christine Sapienza. This group of scientist are
working on curing a symptom of PD, that of difficulty swallowing. This
may seem trivial at first blush until you learn that the leading cause
of death in a PWP (Person with Parkinson’s) is aspiration
pneumonia. Water leaking into the airway causing infection, pneumonia
and death.
In Beijing China compounds found in green tea are being study in the
event that they may slow the progression of PD. Again supported
financially by the Fox Foundation.
Parkinson?s disease is a very highly misunderstood disease. There are an
estimated one and a half million people in the United States suffering
from PD. It is a degenerative neurological disorder that affects the
Dopamine producing area of the brain. This loss of Dopamine can cause at
rest tremors, a slowness of movement, rigidity of trunk and limbs and
impaired balance. These are only the main symptoms of PD with dozens of
secondary symptoms. PD is a quietly devastating disease.
Mr. Fox has joined the political process to promote Stem Cell research,
specifically Embryonic Stem Cell Research (ESCR). Mr. Fox and our media
have bought into the claims of certain members of the scientific
community that embryonic stem cells are the great panacea, the magic
bullet, and a cure all solution. Fact is not a single therapy has been
developed using Embryonic Stem Cells.
Diana Kapp in The $3 Billion Cell Job states [1] ?Not a single embryonic
stem cell has ever been tested in a human being, for any disease.?
Read what she says carefully, not only are their no therapies using
ESCR, but no research project has progressed to the stage of testing on
humans. This after twenty five years of research and testing on
embryonic stem cells obtained from mice.
Stuart Newman, Professor of Cell Biology and Anatomy, New York Medical
College wrote [2] ?there had been essentially no progress in curing or
even palliating disabling conditions for which mouse ?models? existed,
such as diabetes, spinal cord injury, Parkinson?s and so forth.?
No progress towards a cure for diabetes, spinal cord injury or PD, not
even to relieving the symptoms of these tragic disabling conditions.
Neither a single cure nor relief of the any of the symptoms associated
with these diseases.
A leading advocate of ESCR when asked how long it will take for
embryonic stem cell based therapies to be ready, gives the following
answer [3] ?My answer is five years,? he said. ?It’s the same
thing as saying I have no idea.?
That is about as honest an answer as you are likely to find in the
debate over ESCR. As honest as it is telling, no one really can say
definitively that ESCR will produce a cure in the next several decades,
or even if one can be produced.
Quoting Mr. Fox in an interview with Katie Couric on April 16 of 2006
?not all politicians are on the same page as scientists.
Parkinson’s experts believe in stem cell research as a promising
prospect for a cure. But the source of those cells ? human embryos
â€" touches a sensitive nerve in the nation’s capitol.
Either Mr. Fox is not being entirely truthful or he does not fully
comprehend the claims he makes in the above statement. He implies that
all scientists are in agreement with his belief that ESCR is the next
great cure all. That politicians, specifically those in Washington are
to be blamed for its lack of progress.
A case against this point of view can be made from a letter written
during the 2004 Presidential election by fifty-seven noted research
scientists and physicians. The signatories coming from such renowned
research facilities as the Mayo Clinic, Georgetown Medical School ,
Harvard Medical School, and the National Cancer Institute. In this
letter written to the Kerry - Edwards campaign regarding their
statements on ESCR; these same scientists accuse the campaign of being
irresponsible, dangerous and misleading.
Third, the statements you have made regarding the purported medical
applications of embryonic stem cells reach far beyond any credible
evidence, ignoring the limited state of our knowledge about embryonic
stem cells and the advances in other areas of research that may render
use of these cells unnecessary for many applications. To make such
exaggerated claims, at this stage of our knowledge, is not only
scientifically irresponsible ? it is deceptive and cruel to millions of
patients and their families who hope desperately for cures and have come
to rely on the scientific community for accurate information. (Ad-hoc
group of Scientists Letter to the Kerry ? Edwards Campaign October 27th
2004)
After chastising the political campaign of Kerry-Edwards the letter
continues on to describe how research and treatment of non-controversial
adult stem cells have already treated and cured thousands of dozens of
diseases.
Non-embryonic stem cells have been discovered in many unexpected tissues
? in blood, nerve, fat, skin, muscle, umbilical cord blood, placenta,
even dental pulp ? and dozens of studies indicate that they are far more
versatile than once thought. Use of these cells poses no serious ethical
problem, and may avoid all problems of tissue rejection if stem cells
can be obtained from a patient for use in that same patient. Clinical
use of non-embryonic stem cells has grown greatly in recent years. In
contrast to embryonic stem cells, adult stem cells are in established or
experimental use to treat human patients with several dozen conditions,
according to the National Institutes of Health and the National Marrow
Donor Program (Cong. Record, September 9, 2004, pages H6956-7). They
have been or are being assessed in human trials for treatment of spinal
cord injury, Parkinson?s disease, stroke, cardiac damage, multiple
sclerosis, and so on.
Adult Stem Cells are plentiful, easy to obtain and come with out the
moral, ethical and medical baggage of Embryonic Stem Cells. They have
and are being used to treat ?several dozen conditions?, currently.
Again we see that the medically more advanced adult stem cells are a
superior option to those taken at an embryonic state. This is a
scientific fact. The later in the gestation period a cell has achieved
the more stable it becomes. Cells taken at the earliest or blastocyst
stage (5 to 6 days) are highly volatile, difficult to work with and
likely to cause tumors. Later in the development cycle the cell
stabilizes and becomes the type of cell it was designed to be.
Mr. Fox is also wrong in his perception of what pro life is and what is
not. Again a quote from the Katie Couric interview, Mr. Fox in response
to a question about the ?millions of Americans who find the concept of
destroying embryos immoral? :
I would say that, from my opinion, it’s an amazing pro-life thing
to do to take those cells and to endeavor to improve the lives of
millions and billions of people that are alive now and will be alive in
the future by coming up with curesâ€"and treatments for diseases.
His concept of pro life and mine vary greatly. The basic premise to his
answer is that of the pro abortion movement. The idea that lives at
different stages of development are of unequal value and that some
stages are of little to no value. Another way of saying the same thing
would be that the unborn lack some thing that the new born has acquired.
This is the slippery slope we find ourselves on today, and have been
treading ever downward since Roe v. Wade.
All life, the stage of development not withstanding is valuable in the
eyes of our Creator. The Bible teaches that men and women were created
in the image of God
So God created man in his own image, in the image of God he created him;
male and female he created them. Genesis 1:27 (NIV)
Combined with the instruction of the 5th commandment delivered to Moses
in Exodus 20:13 “You shall not murder. (NIV)
This makes it imperative that we are to protect life, from its very
beginning to its natural end. Life is sacred gift. This truth is
unrelated to situation or circumstance. Destroying a human embryo is
destroying a living human being. Any middle school biology student know
that life beings when the cell divides. ESCR destroys a human being.
Michael J. Fox knows this. The scientist proponents of ESCR know this.
They have their own reasons for pushing their agenda.
As a fellow PD patient myself, my outlook on life and its sanctity are
very different from that of Mr. Fox. I have learned to look for the
blessing in all things, even PD. It is the difference between a post
modern worldview and a Christian worldview. When one learns that God is
sovereign and allows nothing that can not be used to His glory to
happen, it gives life a new meaning.
Stem Cell Research can be beneficial to human kind when done properly.
It can be extremely destructive when done outside the bounds of
propriety. We must put aside our personal agendas and educate one
another to the facts. Stem Cell Research on Adult stem cells provides
great promise of even more therapies and treatments in the near future.
In conclusion I want to address Mr. Fox directly by saying, Michael you
have done great things with your foundation, all in your own strength.
However you will never find true happiness or peace until you come to
accept Jesus Christ as the Lord of your life. It staggers my imagination
what you could accomplish were you only acting in His will and not your
own. As the Apostle Paul writing from a Roman prison cell explains it;
I know how to be brought low, and I know how to abound. In any and every
circumstance, I have learned the secret of facing plenty and hunger,
abundance and need. I can do all things through him who strengthens me.
Philippians 4:12-13 (ESV)
I will pray that you God gives you Michael the wisdom to discern the
truth regarding the destruction of embryos and the sanctity of human
life. That he will soften your heart and that you will choose to let Him
in. That you will continue to do His work, His way.
All in the name of Jesus, Amen
Wednesday, September 19, 2007
What it's like to have "My Challenge"
I HAVE BEEN A LOT OF THE SAME QUESTION-HOW IS IT TO LIVE W/ ALS? I ANSWERED THIS AWHILE BACK BUT SINCE AMENDED IT. SO HERE IT GOES..........
I thought long and hard on this one and I have so many scenarios and pictures I want to paint for you. But I was driving yesterday and it came to me. I was thinking maybe I would write an analogy but that wouldn't give you an accurate gage on how you live with it(my challenge) step by step or breathe by breathe. So I came up with this:
It's like falling into quicksand! At first you know that there is a possibility that quicksand exists. And then you happen upon it by total osmosis. Not ever understanding how you got there or why. Your angry because it's blocking your ability to move forward and your scared because you know deep down what lies ahead. But you also have to try and get to the other side because it's what you always do-take a challenge head on. So you put on this brave face and keep walking forward knowing full well your in uncharted territory. You have no choice. So you take that first step and everything changes-life-love-outlook on life-your mental state-your physical state-relationships-that look in people's eyes when they see you for the first time-emails mean something different-questions you had answered before are now open ended-EVERYthing changes!
And as you take that first step you start to wonder why, how and oh shit! I'm going to die from probably the worst disease on the planet. As you sink deeper, things physically start to go one by one. -speech-hands-arm-leg and as you try and fight you know-you just know- to keep fighting till the fighting is done. As you lose your ability to articulate and tie your shoes and your balance goes and your ability to run, you say inside--don't give up trying. But your brain is clear and unaffected so when you want to do something physical your brain knows what to do and sends the signal to say your hands and there's no one home. THAT'S FRUSTRATING! And that's hard for me to accept(I haven't yet) because I try till I get it-yesterday it took me nine tries to button my pants----- so I am fighting! And when I was healthy I could do anything and everything! Articulating is what I miss most-I'm a guy that loves the ball in a tight situation-I lived for that scenario-I WAS IN SALES FOR A REASON-I AM A CLOSER-so when I'm sitting there wanting to do more and I can't-that doesn't sit well w/ me-so I try to speak or fall or say something that no one understands because it's built into my brain-to try at all costs! Plain and simple, I'm not giving in to this fucking disease-no way!!
Mentally I am great-there is no doubt in my mind that I will win-I don't know what that means(winning). If that means beating my challenge then I will and if that means staying alive a few more years than they(doctors) gave me(2 YEARS) then that's a victory also. HEY, I'M A SMART GUY-I KNOW THE ODDS ARE HEAVILY NOT IN MY FAVOR-LAST TIME I CHECKED NO ONE THAT HAS ALS, SURVIVES. AND IF THEY HAVE (LIKE ERIC AND STEPHEN H. AND OTHERS-THAT'S NOT LIVING TO ME-I'D RATHER BE IN HEAVEN AT THAT POINT. Only time will tell but until then I'm coming out WITH MY HEAD HELD HIGH AND FIGHTING! THAT'S ALL I KNOW HOW TO DO.
Hope that answers the question. That is the best I can describe it!!!!!!!!!!!
Keep in touch,
Keep smiling,
L,
Drew
There is no impossibility to him who stands prepared to conquer every hazard.
The fearful are the failing
I thought long and hard on this one and I have so many scenarios and pictures I want to paint for you. But I was driving yesterday and it came to me. I was thinking maybe I would write an analogy but that wouldn't give you an accurate gage on how you live with it(my challenge) step by step or breathe by breathe. So I came up with this:
It's like falling into quicksand! At first you know that there is a possibility that quicksand exists. And then you happen upon it by total osmosis. Not ever understanding how you got there or why. Your angry because it's blocking your ability to move forward and your scared because you know deep down what lies ahead. But you also have to try and get to the other side because it's what you always do-take a challenge head on. So you put on this brave face and keep walking forward knowing full well your in uncharted territory. You have no choice. So you take that first step and everything changes-life-love-outlook on life-your mental state-your physical state-relationships-that look in people's eyes when they see you for the first time-emails mean something different-questions you had answered before are now open ended-EVERYthing changes!
And as you take that first step you start to wonder why, how and oh shit! I'm going to die from probably the worst disease on the planet. As you sink deeper, things physically start to go one by one. -speech-hands-arm-leg and as you try and fight you know-you just know- to keep fighting till the fighting is done. As you lose your ability to articulate and tie your shoes and your balance goes and your ability to run, you say inside--don't give up trying. But your brain is clear and unaffected so when you want to do something physical your brain knows what to do and sends the signal to say your hands and there's no one home. THAT'S FRUSTRATING! And that's hard for me to accept(I haven't yet) because I try till I get it-yesterday it took me nine tries to button my pants----- so I am fighting! And when I was healthy I could do anything and everything! Articulating is what I miss most-I'm a guy that loves the ball in a tight situation-I lived for that scenario-I WAS IN SALES FOR A REASON-I AM A CLOSER-so when I'm sitting there wanting to do more and I can't-that doesn't sit well w/ me-so I try to speak or fall or say something that no one understands because it's built into my brain-to try at all costs! Plain and simple, I'm not giving in to this fucking disease-no way!!
Mentally I am great-there is no doubt in my mind that I will win-I don't know what that means(winning). If that means beating my challenge then I will and if that means staying alive a few more years than they(doctors) gave me(2 YEARS) then that's a victory also. HEY, I'M A SMART GUY-I KNOW THE ODDS ARE HEAVILY NOT IN MY FAVOR-LAST TIME I CHECKED NO ONE THAT HAS ALS, SURVIVES. AND IF THEY HAVE (LIKE ERIC AND STEPHEN H. AND OTHERS-THAT'S NOT LIVING TO ME-I'D RATHER BE IN HEAVEN AT THAT POINT. Only time will tell but until then I'm coming out WITH MY HEAD HELD HIGH AND FIGHTING! THAT'S ALL I KNOW HOW TO DO.
Hope that answers the question. That is the best I can describe it!!!!!!!!!!!
Keep in touch,
Keep smiling,
L,
Drew
There is no impossibility to him who stands prepared to conquer every hazard.
The fearful are the failing
Tuesday, September 18, 2007
Thought
I got this from a friend at the company that provides the stemcells. I concur with this!
"The most wasted of all days is that during which one has not laughed." -- Nicolas De Chamfort
"The most wasted of all days is that during which one has not laughed." -- Nicolas De Chamfort
Wednesday, September 12, 2007
Still working on that answer
Hey All,
I hope all is well.
I have been so busy-I have a standing 5 doctors appointments a week. So forgive me. I am doing well. Will answer in a few days.
Best,
Drew
"mind over matter-if it doesn't mind it doesn't matter"
I hope all is well.
I have been so busy-I have a standing 5 doctors appointments a week. So forgive me. I am doing well. Will answer in a few days.
Best,
Drew
"mind over matter-if it doesn't mind it doesn't matter"
Wednesday, September 5, 2007
Hope is a good thing-maybe the best of things!
This came from someone I know in China!
In our view: Hope where none existed
http://www.joplinglobe.com/editorial/local_story_248004049.html?keyword=topstory
— Need evidence that stem-cell research can produce miraculous results?Six-year-old Rylea Barlett, of Webb City, was born blind, with no hope of ever seeing. But her mother refused to give up, taking her to various specialists in the United States before finally trying stem-cell transplants from umbilical cords at a hospital in Hangzhou, China. After three spinal stem-cell transplants and two IV transplants, Rylea reacts to light, has seen the faces of her mother, brother and sister, and was able to detect a big “E” on the chart across the room in the office of Dr. Larry Brothers, her Joplin optometrist.Her vision is only 20/400. But that may be only the beginning. Rylea is supposed to return to Hangzhou for further stem-cell transplants in March. Although she may never see perfectly, as her mother, Dawn Barlett, said: “You continue to build on what you have gained.”Rylea’s experience offers hope to others who have been blind from birth or perhaps even were blinded in an accident or by a disease. The use of stem cells from umbilical cords has generated new optical nerve cells that allow Rylea to see.A man in Sikeston had stem-cell transplants in the Chinese hospital with the hope of repairing a spinal-cord injury that left him paralyzed from the waist down. He still can’t walk, but he is able to move his toes. No one can guarantee that stem-cell transplants, including the somatic cell nuclear transplants approved for research in Missouri by voters last year, will come up with cures or even ameliorate the ravages of debilitating disease or injury. But the research offers hope where little or none exists. Opponents of stem-cell research argue that the somatic cell nuclear transfer procedure amounts to cloning, despite the language in the amendment written into Missouri’s Constitution last year prohibiting human procreation by cloning, and want to put a stop to it through a grass-roots initiative petition campaign.The research in Missouri already is being hampered by an unstable climate being created by those who are continuing the efforts to overturn or thwart the purpose of the constitutional amendment. Plans for expanding this vital research reportedly have slowed. That is a shame. We don’t fault those who follow their consciences, but we think that they are caught in between rapid advances in medical science that have outpaced medical ethics and public understanding. Rylea is dramatic proof that research into the use of stem cells from the umbilical cord can work. That same hope exists for sufferers of other life-threatening, quality-of-life-dampening injuries and diseases. Their best hope is somatic cell nuclear transfer research here in Missouri, not in a faraway land or city like Hangzhou, China.
Copyright © 1999-2006 cnhi, inc.
In our view: Hope where none existed
http://www.joplinglobe.com/editorial/local_story_248004049.html?keyword=topstory
— Need evidence that stem-cell research can produce miraculous results?Six-year-old Rylea Barlett, of Webb City, was born blind, with no hope of ever seeing. But her mother refused to give up, taking her to various specialists in the United States before finally trying stem-cell transplants from umbilical cords at a hospital in Hangzhou, China. After three spinal stem-cell transplants and two IV transplants, Rylea reacts to light, has seen the faces of her mother, brother and sister, and was able to detect a big “E” on the chart across the room in the office of Dr. Larry Brothers, her Joplin optometrist.Her vision is only 20/400. But that may be only the beginning. Rylea is supposed to return to Hangzhou for further stem-cell transplants in March. Although she may never see perfectly, as her mother, Dawn Barlett, said: “You continue to build on what you have gained.”Rylea’s experience offers hope to others who have been blind from birth or perhaps even were blinded in an accident or by a disease. The use of stem cells from umbilical cords has generated new optical nerve cells that allow Rylea to see.A man in Sikeston had stem-cell transplants in the Chinese hospital with the hope of repairing a spinal-cord injury that left him paralyzed from the waist down. He still can’t walk, but he is able to move his toes. No one can guarantee that stem-cell transplants, including the somatic cell nuclear transplants approved for research in Missouri by voters last year, will come up with cures or even ameliorate the ravages of debilitating disease or injury. But the research offers hope where little or none exists. Opponents of stem-cell research argue that the somatic cell nuclear transfer procedure amounts to cloning, despite the language in the amendment written into Missouri’s Constitution last year prohibiting human procreation by cloning, and want to put a stop to it through a grass-roots initiative petition campaign.The research in Missouri already is being hampered by an unstable climate being created by those who are continuing the efforts to overturn or thwart the purpose of the constitutional amendment. Plans for expanding this vital research reportedly have slowed. That is a shame. We don’t fault those who follow their consciences, but we think that they are caught in between rapid advances in medical science that have outpaced medical ethics and public understanding. Rylea is dramatic proof that research into the use of stem cells from the umbilical cord can work. That same hope exists for sufferers of other life-threatening, quality-of-life-dampening injuries and diseases. Their best hope is somatic cell nuclear transfer research here in Missouri, not in a faraway land or city like Hangzhou, China.
Copyright © 1999-2006 cnhi, inc.
Tuesday, September 4, 2007
Still searching for the right words
Hey All,
It is now 7 days (I think) since I was going to explain how "living with my challenge" affects me on a daily basis! Well, I am trying to find the correct analogy. But I am finding this assignment quite difficult-because it changes daily. And then I think long and hard and I get upset, mad and emotional. I never thought in a million years I would have to answer that question but I do and I will--provide an answer because it is there somewhere in the abyss(that is called my brain).
As for me-Positive as I have ever been. You know I have come to accept who I am today emotionally(my relationships and my state of mind are far better than I could have ever imagined) but not physically-yet. And with that said , Give me a few days to paint a work of art for you on how my challenge affects me on a daily basis!!
A question to a certain someone: Where have you gone KMR?
Smile at someone today!
L,
D
It is now 7 days (I think) since I was going to explain how "living with my challenge" affects me on a daily basis! Well, I am trying to find the correct analogy. But I am finding this assignment quite difficult-because it changes daily. And then I think long and hard and I get upset, mad and emotional. I never thought in a million years I would have to answer that question but I do and I will--provide an answer because it is there somewhere in the abyss(that is called my brain).
As for me-Positive as I have ever been. You know I have come to accept who I am today emotionally(my relationships and my state of mind are far better than I could have ever imagined) but not physically-yet. And with that said , Give me a few days to paint a work of art for you on how my challenge affects me on a daily basis!!
A question to a certain someone: Where have you gone KMR?
Smile at someone today!
L,
D
Tuesday, August 28, 2007
Thought
Hey,
Hope you're well!
I have been asked by many, "what does it feel like to have my challenge". Physically. I will think about that. And share my answer tomorrow. I want to paint a picture for you. Meanwhile here is something I received via email-and it's so TRUE!
L,
Drew
I will no longer worry about yesterday.It is in the past and the past will never change.Only I can change by choosing to do so. I will no longer worry about tomorrow.Tomorrow will always be there,waiting for me to make the most of it.But I cannot make the most of tomorrow without first making the most of today. I will look in the mirror and I will see a person worthy of my respect and admiration.This capable person looking back at me is someone I enjoy spending time with and someone I would like to get to know better. I will cherish each moment of my life.I value this gift bestowed upon me in this world and I will unselfishly share this gift with others.I will use this gift to enhance the lives of others. I will take a moment to step off the beaten path and to revel in the mysteries I encounter.I will face challenges with courage and determination.I will overcome what barriers there may be which hinder my quest for growth and self-improvement. I will take life one day at a time,one step at a time.Discouragement will not be allowed to taint my positive self-image,my desire to succeed or my capacity to love. I walk with renewed faith in human kindness.Regardless of what has gone before,I believe there is hope for a brighter and better future. I will open my mind and my heart.I will welcome new experiences.I will meet new people.I will not expect perfection from myself nor anyone else:perfection does not exist in an imperfect world.But I will applaud the attempt to overcome human foibles. I am responsible for my own happiness and I will do things that make me happy. . .admire the beautiful wonders of nature,listen to my favorite music,pleasure can be found in the most simple of gestures. I will learn something new;I will try something different;I will savor all the various flavors life has to offer.I will change what I can and the rest I will let go.I will strive to become the best me I can possibly be. ..... and every day.
by Penny White, copyright 1990
Hope you're well!
I have been asked by many, "what does it feel like to have my challenge". Physically. I will think about that. And share my answer tomorrow. I want to paint a picture for you. Meanwhile here is something I received via email-and it's so TRUE!
L,
Drew
I will no longer worry about yesterday.It is in the past and the past will never change.Only I can change by choosing to do so. I will no longer worry about tomorrow.Tomorrow will always be there,waiting for me to make the most of it.But I cannot make the most of tomorrow without first making the most of today. I will look in the mirror and I will see a person worthy of my respect and admiration.This capable person looking back at me is someone I enjoy spending time with and someone I would like to get to know better. I will cherish each moment of my life.I value this gift bestowed upon me in this world and I will unselfishly share this gift with others.I will use this gift to enhance the lives of others. I will take a moment to step off the beaten path and to revel in the mysteries I encounter.I will face challenges with courage and determination.I will overcome what barriers there may be which hinder my quest for growth and self-improvement. I will take life one day at a time,one step at a time.Discouragement will not be allowed to taint my positive self-image,my desire to succeed or my capacity to love. I walk with renewed faith in human kindness.Regardless of what has gone before,I believe there is hope for a brighter and better future. I will open my mind and my heart.I will welcome new experiences.I will meet new people.I will not expect perfection from myself nor anyone else:perfection does not exist in an imperfect world.But I will applaud the attempt to overcome human foibles. I am responsible for my own happiness and I will do things that make me happy. . .admire the beautiful wonders of nature,listen to my favorite music,pleasure can be found in the most simple of gestures. I will learn something new;I will try something different;I will savor all the various flavors life has to offer.I will change what I can and the rest I will let go.I will strive to become the best me I can possibly be. ..... and every day.
by Penny White, copyright 1990
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