I have to say I am in total shock that the NY TIMES has picked this up and is reporting on CCSVI!
Is this a turning point here in the US press?
THE ARTICLE
Monday, June 28, 2010
Clinical trial in Buffalo start 'Liberation Treatment'
I applaud the BNAC and their continuing efforts to get this done. It's great to see people stepping up and getting this work done in some kind of timely fashion!
Now on the other hand there is the US press. ZERO coverage of this. Other countries are reporting away on it. Unfortunately for us the pharmaceuticals run the US.
Entire Article
Now on the other hand there is the US press. ZERO coverage of this. Other countries are reporting away on it. Unfortunately for us the pharmaceuticals run the US.
Researchers at the University at Buffalo are about to launch North America's first clinical trial to test the said...
iberation treatment," an experimental therapy designed to halt the symptoms of multiple sclerosis."
CMAJ Editor-in-Chief Dr. Paul Hebert and Deputy Editor Dr. Matthew Stanbrook note that several MPs in Ottawa have recently lobbied the federal government to invest in research into the controversial treatment. They note, as well, that patients have held well-publicized demonstrations, demanding access to the liberation procedure -- which they applaud.
Patients should insist on evidence. They should also insist on having their views represented when decisions about where to spend research dollars are made, said...
Entire Article
Wednesday, June 23, 2010
CCSVI Treatment update.
Just a quick note for those looking into the procedure and having it done. The "doctor/facility" I am involved with has just changed there process for bringing people in and scheduling them. Prior to this you called, got on a waiting list, the facility called (within 72 hours) did the preliminaries and then the doctor would call you 3 -4 weeks later to go over all the specifics and any questions. Since there had been a HUGE influx of calls up to 60-70 a day now. They have changed the procedures a bit. At the doctor call stage you will now get an email and the doctor will only contact you once you have a date for treatment.
There are several reasons for the change. The obvious is the huge amount of calls. The second is people taking up large amounts of time only to cancel out because they have found an alternate option for treatment. I am not sure why people would want to waste the doctors time like that but I can fully understand the doctor needing to prioritize things. I would expect him to adjust things to deal with the people he will actually be seeing.
There are several reasons for the change. The obvious is the huge amount of calls. The second is people taking up large amounts of time only to cancel out because they have found an alternate option for treatment. I am not sure why people would want to waste the doctors time like that but I can fully understand the doctor needing to prioritize things. I would expect him to adjust things to deal with the people he will actually be seeing.
Friday, June 18, 2010
CCSVI and MY Liberation treatment (YES MY!)
BIG news for me I have started the process to get the Liberation Treatment. I have gotten on the "list", I have discussed the preliminaries with the facility, and am awaiting my phone call from the doctor. Now with every step there is a waiting period but I have lots to do and lots to fill you in on. This is a VERY exciting time for me.
I will be launching a new website very soon that will help people learn about CCSVi, the site will also have information on my treatment and chronicle every step of what is going on with me and how things have effected me. My blog will be the day to day source for me and have the most in-depth information. It will become a main extension of my new site.
More on CCSVI, my new site and of course how everything is effecting me very soon.
I wish everyone the best and appreciate all the well wishes and help.
I will be launching a new website very soon that will help people learn about CCSVi, the site will also have information on my treatment and chronicle every step of what is going on with me and how things have effected me. My blog will be the day to day source for me and have the most in-depth information. It will become a main extension of my new site.
More on CCSVI, my new site and of course how everything is effecting me very soon.
I wish everyone the best and appreciate all the well wishes and help.
Sunday, June 13, 2010
SPOONS
This isn't my story but it hits home and is so true....
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.
As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know?
I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to mehaving MS.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the "spoon theory" was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to. The healthy have the luxury of choice, a gift most people take for granted.
Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become?
I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of "spoons." But when you have MS and you have to plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, "no, you don't just get up. You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!" I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MSits just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my "spoons."
After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste spoons and I choose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."
My best friend and I were in the diner talking. As usual, it was very late and we were eating French Fries with gravy. Like normal girls our age, we spend a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spend most of our time laughing.
As I went to take some of my vitamins with a snack as I usually did, she watched me this time with a kind of start, instead of continuing the conversation.She then asked me out of the blue what it felt like to have MS and be sick. I was shocked, not only because she asked the random question but also, I assumed she knew all there was to know about MS. She had come to the doctors with me, seen me getting MRI's, she saw me stumble on sidewalks and have to sit down at a concert. She carried me out when I couldn't walk another step, what else was there to know?
I started to ramble on about the vitamins and the changes but she didn't seem satisfied with my answers. I was a little surprised as being my roommate and friend for years; I thought she already knew the medical definition of MS. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no healthy person can truly understand. She asked what it felt like, not physically, but what it felt like to mehaving MS.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least a stall. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a person with MS goes through every day with clarity? I could have given up and cracked a joke like I usually do, and changed the subject, but I remember thinking if I don't try to explain this, how could I ever expect her to understand? If I can't explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the "spoon theory" was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked her in the eyes and said, " Here you go, you have MS." She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked together as I shoved them into her hands. I explained that the difference between having MS and being healthy is having to make choices, or to think consciously about things when the rest of the world doesn't have to. The healthy have the luxury of choice, a gift most people take for granted.
Most people start the day with an unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to take away, since most people who get MS feel the "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case MS, in control.
She grabbed the spoons with excitement. She didn't understand what I was doing, but she is always up for a good time. Little did she know how serious the game would become?
I asked her to count the spoons. She asked why, and I explained that the spoons represented units of energy and when you are healthy you expect to have a never-ending supply of "spoons." But when you have MS and you have to plan your day, you need to know exactly how many "spoons" you are starting with. It doesn't guarantee you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started the game yet. I've wanted more "spoons" for years and haven't found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has MS.
I asked her to list off her day, including the most simple tasks. As she rattled off daily chores, or just fun things to do I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said, "no, you don't just get up. You have to crack your eyes open and then realize you are late. You didn't sleep well the night before. You have to crawl out of bed, and you have to make yourself something to eat before you do anything else because you have to take your vitamins and have energy for the day and if not you might as well give up on spoons for the whole day!" I quickly took away a spoon and she realized she hasn't even gotten dressed yet. Showering cost her another spoon, just washing her hair and shaving her legs. Reaching too high or low, or having the shower water too hot and choosing to blow dry her hair would have cost more than one spoon but I didn't want to scare her too much in the beginning. Getting dressed is worth another spoon. I stopped her and broke down every task to show her how every detail needs to be thought about. You have to see what clothes you can physically put on, what shoes are going to be appropriate for the days walking requirements, if pain or spacticity is a problem, buttons are out. If I have bruising from my medication, long sleeves might be in order. You cannot simply throw clothes on when you have MSits just not that easy.
I think she started to understand when she theoretically didn't even get to work yet and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow's "spoons" but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who has MS lives with the looming thought that tomorrow may be the day that a fever comes, or an infection, or any number of things that could prove disabling. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn't want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of the real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing on her computer for too long. She was forced to make choices and to think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had two spoons left. If she cooked, she wouldn't have enough energy to clean the pots. If she went out to dinner, she might be too tired to drive home safely without having blurred vision or forgetting to turn her lights on. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores but you can't do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn't want my friend to be upset, but at the same time I was happy to think maybe finally someone understood me a little bit. She had tears in her eyes and asked quietly, "Christine, how do you do it? Do you really do this everyday?" I answered that some days were worse than others , some days I have more spoons than most. But I can never make it go away and I can't ever for a minute forget about it, I always have to think about it. I handed her a spoon I had been holding on reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve, you need to always be prepared."
It's hard, the hardest thing I ever had to learn is to slow down, and not to do everything. I fight this very day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel the frustration. I wanted her to understand that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather and my own body before I can attack any one thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between having a chronic illness and being healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count my "spoons."
After we were emotional and talked about this for a while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug and we walked out of the diner. I had one spoon in my hand and I said, "Don't worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don't have room to waste spoons and I choose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they look at their own life a little differently. I think it isn't just good for understanding MS, but anyone dealing with any disability or illness. Hopefully, they don't take so much for granted or their life in general. I give a piece of myself, in every sense of the words, every time I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons."
Saturday, June 12, 2010
National MS Societies are going after CCSVI to disprove it.
I can't tell you how mad this makes me and how poorly I now see the National MS societies. THey Will NEVER get another dime from me.
http://www.facebook.com/note.php?note_id=403618352210&id=11079628229 7
Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.
In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.
An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study--
"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.
He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."
http://www.thisisms.com/ftopic-12178-30.html
So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.
Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.
I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.
http://www.facebook.com/note.php?note_id=403618352210&id=11079628229 7
Today, the gray area has been eliminated. It's now just black and white. We have been patiently waiting to see if the National MS Societies in Canada and the US were actually going to go to the specialists who understand CCSVI in patients with MS. Drs. Dake, Haake and BNAC were all applicants for funding of their research. I know there were others who have studied CCSVI in patients and applied for funding. None of these very experienced doctors were given any money. No vascular doctors were awarded any research grants.
In the US, the money was awarded to 3 "insider" researchers--neurologists and doctors who are on panels, advisory committees for the NMMS, and have received NMMS monies before.
An MS patient of Dr. Aaron Miller's (head neurologist of the NMMS) made this post on ThisIsMS.com tonight-regarding the study--
"I saw my neuro last night. He is the head NMSS neuro, the one who opened the panel discussion at the AAN meeting in Canada in April by saying we all know MS is an autoimmune disease.
He mentioned to me that today was the "big day", and that the studies being funded were diagnostic, not treatment based. I said, ....to prove Zamboni's theory he said, .....no, to disprove it."
http://www.thisisms.com/ftopic-12178-30.html
So, now we know where we stand. Dr. Miller has made it clear. The research grants have made it clear. The line has been drawn in the sand. These studies are being funded to disprove Dr. Zamboni's research.
Where does this leave us? I believe we are now in the drivers' seat. We are not passengers in the MS Society mobile anymore. They have given us a very clear response. Now we take our money, our influence, and our power for ourselves. We use the connections we have made across national boundaries and languages--here on the internet--we organize and we mobilize money and research and treatment. We work with the vascular doctors, we work with the IRs, we support Dr. Zamboni and all of the brave, pioneering doctors who have taken up this challenge for us. We can do this.
I will not tell you how to donate your hard-earned money and volunteer hours. That's not for anyone to decide but you and your family. But I will tell you that the National MS Societies are not the end of this discussion. Neurologists can disprove Dr. Zamboni's research as much as they want. They cannot change the reality of an IR finding bilateral jugular stenosis. They cannot stop a vascular surgeon from encountering venous reflux. They cannot change a research paper written on discovery of CCSVI in 95% of pwMS. They cannot diminish my husband's return of energy, ability to hike, bike and ski after angioplasty. They cannot change the reality of the hundreds of patients finding symptom relief and remission from their MS. And they will not stop us from speaking out and looking for the truth and healing. Using science, and medicine and our God-given gifts. They may have some money (well, maybe less next year...) but they cannot buy the truth. The truth is free.
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