I thought I'd published the final chapter of this blog over a year ago but as I learn more about my brain I find I want to say more about it.
The process of ignoring the TN so that it would go away was certainly effective and pain is now a thing of the past for me. Woo Hoo!
As I learn more about how the brain works I understand why ignoring the TN made it go away.
I used to spend a HUGE amount of time thinking about the pain and as a consequence it became a HUGE problem. This is because the brain is dynamic and anything we spend a lot of time thinking about spreads out into all available spaces and even pushes the things aside that we've ignored lately. So, as I spent more time concentrating on playing Spider the real estate of my brain was increasingly used for that function. As the pain eased I was able to concentrate on a wider range of interests and activities and these took up more room in my brain. The TN became less of a focus and eventually its brain real estate was overwritten by other things.
The explanation I've just given sounds like a casual and easy process but it wasn't that way. The brain will only rewire with focussed concentration so while it was a simple thing to do it didn't happen overnight. It took me about 3 months to be finally clear of the pain and at all times I had to maintain my belief that it was working and I wasn't deluding myself that there were improvements along the way.
It doesn't work to try to NOT think of something. When I say "try not to think of an elephant" you immediately picture one in your mind's eye, right? (Or at least most people do). The only way to get something out of your head is to replace the thought with something else. That's where Spider worked for me as a training tool.
There's a far better process that's now available online. It's a brain exercise system that came out of research mentioned in The Brain That Changes Itself by Norman Doidge and it's designed to improve all of the brain's cognitive functions. You can find it at www.brainhq.com
You can sign in to the website as a guest and try out the exercises and if you like it then you can create an account for a small annual fee. They are still developing more exercises as time goes on. I'm using it to make sure my brain will get better and better as time goes on.
I won't say this is my last post like I did on the previous one because I may change my mind again.
love and best wishes,
Lena
Friday, October 12, 2012
Tuesday, April 26, 2011
The final Chapter
It's been over a year since I last posted to this blog and much has changed.
My recovery from MS is now complete. All of my symptoms have now disappeared and I'm able to work at exercising my body to its full strength. Life's good.
The symptom that took the most time to eliminate was trigeminal neuralgia. Even after recovering the use of my legs to within normal parameters I was plagued with TN and became comvinced that it was going to be with me forever.
I tried everything - diet, meditation, alternative medicines, massage, cranio-sacral therapy, visualisation, acupuncture. You name it, I tried it. Nothing shifted the pain that persisted in torturing me daily.
I noticed that the more I thought about it the more of a problem it became so in desperation I turned to distraction and played Spider Solitaire on my laptop whenever the pain struck. It made the problem bearable.
Encouraged by this, I then started to tell a new story. I said to myself (and anyone who asked about it) that "I've tried everything else so now I'm giving the 'ignore it and it will go away' principle a go". So that's what I did.
After a while I noticed that the incidence and severity of the problem reduced and I began to feel optimistic that this was actually working for me. So it became a habit to completely ignore the MS and be happy that I was getting better and better every day.
The TN is completely gone now and my policy for maintaining my wellness is happiness. At any moment in time I care about how I feel and I look for things that take me to a better-feeling place. I used to live almost exclusively in my head before and now I live in my heart most of the time and the benefits of this approach are huge.
I appreciate life and have little time for the small stuff that used to preoccupy me. My creativity as an artist is at an all-time high. Life is wonderful.
So this is my last post to this blog. I'm way too busy enjoying my life and work to spend even another moment contemplating what is now ancient history for me.
Bye and best wishes.
Lena
My recovery from MS is now complete. All of my symptoms have now disappeared and I'm able to work at exercising my body to its full strength. Life's good.
The symptom that took the most time to eliminate was trigeminal neuralgia. Even after recovering the use of my legs to within normal parameters I was plagued with TN and became comvinced that it was going to be with me forever.
I tried everything - diet, meditation, alternative medicines, massage, cranio-sacral therapy, visualisation, acupuncture. You name it, I tried it. Nothing shifted the pain that persisted in torturing me daily.
I noticed that the more I thought about it the more of a problem it became so in desperation I turned to distraction and played Spider Solitaire on my laptop whenever the pain struck. It made the problem bearable.
Encouraged by this, I then started to tell a new story. I said to myself (and anyone who asked about it) that "I've tried everything else so now I'm giving the 'ignore it and it will go away' principle a go". So that's what I did.
After a while I noticed that the incidence and severity of the problem reduced and I began to feel optimistic that this was actually working for me. So it became a habit to completely ignore the MS and be happy that I was getting better and better every day.
The TN is completely gone now and my policy for maintaining my wellness is happiness. At any moment in time I care about how I feel and I look for things that take me to a better-feeling place. I used to live almost exclusively in my head before and now I live in my heart most of the time and the benefits of this approach are huge.
I appreciate life and have little time for the small stuff that used to preoccupy me. My creativity as an artist is at an all-time high. Life is wonderful.
So this is my last post to this blog. I'm way too busy enjoying my life and work to spend even another moment contemplating what is now ancient history for me.
Bye and best wishes.
Lena
Friday, February 27, 2009
Neuroplasticity
Probably one of the most important books I've read recently is "The Brain that Changes itself" by Norman Doidge. The book looks at a number of medical professionals who have worked with the idea of neuroplasticity in a variety of circumstances.In it I found a very clear explanation of why I managed to overcome the effects of MS by reprogramming my neural networks to bypass the "broken bits".
Many years ago it was believed that once the brain was damaged it could not be repaired, but now we know that the brain, by its very function, is a dynamically changing organ. There is one example in the book of a woman who was born with only one hemisphere in her brain and the other side took over the functions of the missing half.
The book is well worth reading.
Thursday, June 5, 2008
stem cells
This morning on Mark Bannerman's breakfast program (Radio National) he had a science story from Chris Smith about stem cell research.
A scientific team has taken a group of mice with a genetic deficiency related to damaged myelin on their nerves. Using human stem cells from aborted foetal tissue they've implanted stem cells into the mice and successfully regrown the myelin coatings. Normally, the stem cells would have been rejected by the immune systems of the mice but this didn't happen because these particular mice were immune deficient. Of the mice treated, 25% continued to live beyond their normal life expectancy. I'm not going to comment about this study, I'm just bringing it to your attention as being another avenue of medical research related to MS. If you'd like to read more you'll find it at http://www.abc.net.au/rn/breakfast/stories/2008/2266734.htm
Speaking of stem cell research...
After Christopher Reeve had the riding accident that resulted in quadriplegia he campaigned for stem cell research and invested in many research programs. At the same time, he set up a physical training support program to ensure that his body was kept at the peak of it's health. I read somewhere that by doing this he ensured that his body became healthier after the accident than it was prior to it. He was completely convinced that a solution would be found for his condition and he wanted to be ready for it when it did. This is another example where the health of muscle tissue doesn't depend on the nerves connected to them. I have a great deal of respect for the things he achieved after the accident and I sincerely feel that he was more of a Superman in his wheelchair than he was as an actor. A sad loss, but his legacy lives on.
A scientific team has taken a group of mice with a genetic deficiency related to damaged myelin on their nerves. Using human stem cells from aborted foetal tissue they've implanted stem cells into the mice and successfully regrown the myelin coatings. Normally, the stem cells would have been rejected by the immune systems of the mice but this didn't happen because these particular mice were immune deficient. Of the mice treated, 25% continued to live beyond their normal life expectancy. I'm not going to comment about this study, I'm just bringing it to your attention as being another avenue of medical research related to MS. If you'd like to read more you'll find it at http://www.abc.net.au/rn/breakfast/stories/2008/2266734.htm
Speaking of stem cell research...
After Christopher Reeve had the riding accident that resulted in quadriplegia he campaigned for stem cell research and invested in many research programs. At the same time, he set up a physical training support program to ensure that his body was kept at the peak of it's health. I read somewhere that by doing this he ensured that his body became healthier after the accident than it was prior to it. He was completely convinced that a solution would be found for his condition and he wanted to be ready for it when it did. This is another example where the health of muscle tissue doesn't depend on the nerves connected to them. I have a great deal of respect for the things he achieved after the accident and I sincerely feel that he was more of a Superman in his wheelchair than he was as an actor. A sad loss, but his legacy lives on.
Choices
In the mail yesterday were two newsletters about MS. One was MS Life, produced by the MS Society in Qld and the other was the newsletter of MS research.
One of the articles in MS Life was about someone who was diagnosed 4 years ago and is now on Beta Interferon so I thought I'd check what this particular drug does. This article http://www.sfn.org/index.cfm?pagename=brainbriefings_betainterferonandmultiplesclerosis explains that Beta-Interferon does a similar thing to the Tysabri in terms of strengthening the blood-brain barrier and it also claims to reduce inflamation. The article doesn't mention how effective it's proving to be but I recall reading elsewhere that it's not hugely effective, although it's all speculation as I explained in my original post.
After I read the research newsletter as well I came to the conclusion that the system has been largely set up to deal with the worst cases, not to provide useful information for the majority of us who are generally well most of the time. MS Life says that every day 3 young Australians are diagnosed with MS. What are their doctors telling them about how to deal with it? Are they being frightened into taking Beta-Interferon from day one? Are they being advised to take up an exercise program to maintain their muscle strength, or are they told to rest and take it easy instead?
Many years ago I used to go to the Dutton Park centre (in Brisbane) to attend the monthly meetings of People with MS. I did this for a number of years and a lot of the members at the time were self-injecting Beta Interferon, convinced that they were better for it. It was my observation, however, that over time they became foggier in their mental acuity and I became convinced that this was more a function of the drug than of the MS itself. It was during this period that I was experimenting with ice skating and having positive results so I explained this to the members on a number of occasions. Noone else seemed willing to try it for themselves so I stopped going to the meetings and continued along my own path.
F5m is an organisation that's aiming to raise $5million for MS research and according to the newsletter their tally is $1.8million to date. That's all well and good but any results they're likely to achieve through the research are not going to help the 3 young Australians who were supposedly diagnosed with it today..or yesterday..or tomorrow so it's really up to the individual to decide what to do and how to manage the disease.
In my view there are clearly two options; either to start down the slippery path of drug therapy, as I'd guess most neurologists are recommending, or to join a gym and maintain a high level of physical fitness to be able to cope with any possible adversity. I guess there's a third option - to do both, but that may involve the side effects of drug therapy, not good for overall well being and therefore contra to the fitness idea.
If you were to become one of those 3 young Australians tomorrow what do you think you would choose to do?
One of the articles in MS Life was about someone who was diagnosed 4 years ago and is now on Beta Interferon so I thought I'd check what this particular drug does. This article http://www.sfn.org/index.cfm?pagename=brainbriefings_betainterferonandmultiplesclerosis explains that Beta-Interferon does a similar thing to the Tysabri in terms of strengthening the blood-brain barrier and it also claims to reduce inflamation. The article doesn't mention how effective it's proving to be but I recall reading elsewhere that it's not hugely effective, although it's all speculation as I explained in my original post.
After I read the research newsletter as well I came to the conclusion that the system has been largely set up to deal with the worst cases, not to provide useful information for the majority of us who are generally well most of the time. MS Life says that every day 3 young Australians are diagnosed with MS. What are their doctors telling them about how to deal with it? Are they being frightened into taking Beta-Interferon from day one? Are they being advised to take up an exercise program to maintain their muscle strength, or are they told to rest and take it easy instead?
Many years ago I used to go to the Dutton Park centre (in Brisbane) to attend the monthly meetings of People with MS. I did this for a number of years and a lot of the members at the time were self-injecting Beta Interferon, convinced that they were better for it. It was my observation, however, that over time they became foggier in their mental acuity and I became convinced that this was more a function of the drug than of the MS itself. It was during this period that I was experimenting with ice skating and having positive results so I explained this to the members on a number of occasions. Noone else seemed willing to try it for themselves so I stopped going to the meetings and continued along my own path.
F5m is an organisation that's aiming to raise $5million for MS research and according to the newsletter their tally is $1.8million to date. That's all well and good but any results they're likely to achieve through the research are not going to help the 3 young Australians who were supposedly diagnosed with it today..or yesterday..or tomorrow so it's really up to the individual to decide what to do and how to manage the disease.
In my view there are clearly two options; either to start down the slippery path of drug therapy, as I'd guess most neurologists are recommending, or to join a gym and maintain a high level of physical fitness to be able to cope with any possible adversity. I guess there's a third option - to do both, but that may involve the side effects of drug therapy, not good for overall well being and therefore contra to the fitness idea.
If you were to become one of those 3 young Australians tomorrow what do you think you would choose to do?
Wednesday, June 4, 2008
links
I forgot to add a couple of links in my earlier post. The history of Tysabri is here http://www.webmd.com/multiple-sclerosis/news/20060605/fda-lets-ms-drug-tysabri-return and the TGA document is here http://www.msra.org.au/news/documents/Tysabri-July07.pdf
On thinking about it a bit more I guess the major problem with having no T-cells in the brain would be if there's a rogue virus around as there'd be no defence mechanism in place to knock it out. I also wonder what effect the extra protein on the T-cell would have when it's elsewhere in the body.
The human body is such an amazingly complex organism that I question the validity of using pharmaceuticals that target specific chemical processes in isolation. I wonder if we know enough of the big picture to completely understand the ramifications of a particular action. That's why I'd rather not experiment on myself and why I choose to stay chemical free in the management of my MS.
On thinking about it a bit more I guess the major problem with having no T-cells in the brain would be if there's a rogue virus around as there'd be no defence mechanism in place to knock it out. I also wonder what effect the extra protein on the T-cell would have when it's elsewhere in the body.
The human body is such an amazingly complex organism that I question the validity of using pharmaceuticals that target specific chemical processes in isolation. I wonder if we know enough of the big picture to completely understand the ramifications of a particular action. That's why I'd rather not experiment on myself and why I choose to stay chemical free in the management of my MS.
Tuesday, June 3, 2008
MS Awareness
It's MS Awareness Week here in Australia so I've heard and seen some new information that I'd like to share and comment about.
In the recent budget the Government put a new MS drug on the PBS list that will allow more people to access it from July 1st. It called Tysabri and it's manufactured by Biogen-Idec.
I did a search on the net and this is what I found out about it. Tysabri was originally issued in the US in 2004. It was removed a year later after a few people taking the drug contracted PML (progressive multifocal leukoencephalopathy) and died. It was then allowed back onto the market in 2006 after "appropriate steps" were taken.
In July 2007 it was approved by the Australian Therapeutic Goods Administration. At that time anyone taking it had to pay $33000 per year for the priviledge. The recent PBS listing brings that price down to an affordable level, however (and I quote) "due to the emergence of the link to PML in the clinical trials, specific safety procedures and patient tracking systems for adverse events have been put in place worldwide." I assume that is what they meant by appropriate steps.
What does Tysabri do?
It's designed to hamper the movement of immune cells from the bloodstream across the blood-brain barrier into the brain and spinal cord. It does this by attaching itself to a protein in the T-cell (immune cell) to prevent it going in.
Ok, let's look at the big picture here. MS is an auto-immune disease, which means that it's the body's own immune system attacking the myelin coating on nerves. The more frequently this happens the more damage occurs, therefore the worse the prognosis. So, Tysabri changes the chemistry of the T-cells and prevents them from crossing over from the blood to the brain and spinal cord, reducing the possiblity of the T-cells being destructive.
Is this a good thing? (From here I'm going to be totally subjective so if you're expecting an unbiased argument then you may as well tune out at this point)
IF I had an aggressive relapsing/remitting form of MS (which I don't) and I was feeling totally depressed and disillusioned about life then, and only then, I MIGHT choose to invest in this sort of insurance policy, because that's all it is. It seems to adopt a "shoot the messenger" approach because no one knows who or what is sending the messages in the first place.
Does anyone really know what role the T-cells play in the brain and spinal cord? If you do then please tell me. I assume that the lack of T-cells in the people on the trial who died may have allowed a killer virus to get into the brain. What other consequences might there be if there are no T-cells getting to the brain? Is there some sybiotic relationship between T-cells and some other brain component that has a role to play in thought processes or memory? I assume that we don't know this, which is why I wouldn't want to experiment with my own brain chemistry.
If you have any view on what I've written then please leave a comment and I'll be happy to discuss it with you.
In the recent budget the Government put a new MS drug on the PBS list that will allow more people to access it from July 1st. It called Tysabri and it's manufactured by Biogen-Idec.
I did a search on the net and this is what I found out about it. Tysabri was originally issued in the US in 2004. It was removed a year later after a few people taking the drug contracted PML (progressive multifocal leukoencephalopathy) and died. It was then allowed back onto the market in 2006 after "appropriate steps" were taken.
In July 2007 it was approved by the Australian Therapeutic Goods Administration. At that time anyone taking it had to pay $33000 per year for the priviledge. The recent PBS listing brings that price down to an affordable level, however (and I quote) "due to the emergence of the link to PML in the clinical trials, specific safety procedures and patient tracking systems for adverse events have been put in place worldwide." I assume that is what they meant by appropriate steps.
What does Tysabri do?
It's designed to hamper the movement of immune cells from the bloodstream across the blood-brain barrier into the brain and spinal cord. It does this by attaching itself to a protein in the T-cell (immune cell) to prevent it going in.
Ok, let's look at the big picture here. MS is an auto-immune disease, which means that it's the body's own immune system attacking the myelin coating on nerves. The more frequently this happens the more damage occurs, therefore the worse the prognosis. So, Tysabri changes the chemistry of the T-cells and prevents them from crossing over from the blood to the brain and spinal cord, reducing the possiblity of the T-cells being destructive.
Is this a good thing? (From here I'm going to be totally subjective so if you're expecting an unbiased argument then you may as well tune out at this point)
IF I had an aggressive relapsing/remitting form of MS (which I don't) and I was feeling totally depressed and disillusioned about life then, and only then, I MIGHT choose to invest in this sort of insurance policy, because that's all it is. It seems to adopt a "shoot the messenger" approach because no one knows who or what is sending the messages in the first place.
Does anyone really know what role the T-cells play in the brain and spinal cord? If you do then please tell me. I assume that the lack of T-cells in the people on the trial who died may have allowed a killer virus to get into the brain. What other consequences might there be if there are no T-cells getting to the brain? Is there some sybiotic relationship between T-cells and some other brain component that has a role to play in thought processes or memory? I assume that we don't know this, which is why I wouldn't want to experiment with my own brain chemistry.
If you have any view on what I've written then please leave a comment and I'll be happy to discuss it with you.
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