Taking Control of Multiple Sclerosis
I had the pleasure of discovering an amazing website recently on Multiple Sclerosis: Taking Control of Multiple Sclerosis. The site was created by Professor George Jelinek, MD. Jelinek’s mom died from MS, and he himself was diagnosed in 1999. The first sentence I read on the homepage suggested that the illness could be overcome. Now that’s my kinda website! There are plenty of MS sites and blogs that talk about how it sucks to be sick, and they publish the standard medical information about the illness. Dull. Bleh. Not interested. I want to expose myself to the peeps who believe in healing, who have firmly and stubbornly implanted in themselves the notion that they can and will get well. Yeah, that’s what drives my train. Because the first step in healing is believing you can.
Prof. Jelinek says:
Possibilities: Although there is no cure, the medical literature has considerable evidence that MS is a modern, lifestyle disease of developed countries like diabetes, heart disease and cancer, and that, as with these diseases, there are many lifestyle changes that modify its course. These therapies have been extensively researched and offer exciting possibilities for controlling the illness and preventing disability.
I love this guy! So much so that I’ve reprinted what I believe to be some very relevant and important thoughts from his site below (these can be found under the “mind-body connection” link). I encourage everyone reading this to check out the website for more – it’s extensive and chock full of information, but most importantly, it’s all given through the filter of believing that you can get well.
The Patient’s Influence on Illness
What is it that sets apart people who recover from serious illness? In general they find the illness a challenge and an opportunity for personal growth. They tackle the illness actively, rather than being passive recipients of doctors’ treatments. They go to every source for information, are open-minded about unconventional therapies, try everything. They feel empowered by the discoveries they make to take control of their illnesses, and indeed, their lives.
There is a movement in medicine away from the conventional parentalistic view of impersonal doctors treating passive recipients of their care, patients who don’t argue or say what they want, and who are therefore not empowered to tackle the changes they must make to overcome disease. Visionary physicians like Deepak Chopra and Bernie Siegel lead this revolution. They understand what potential we have within us for modifying the course of disease, if only we choose to, and are allowed to use it. And of course we can learn much from individuals, such as Ian Gawler, who have themselves recovered from ‘terminal’ cancer. The messages from all of these people are surprisingly similar.
Illness as a Challenge
Serious illness is a challenge. Many patients come to regard it as a gift. Like other challenges in life, out of the kernel of the problem may come wonderful insights and answers that transform our lives. For those of us with MS, and cancer, and many other serious diseases, it is worth remembering that the illness is part of us. I don’t like to think of tackling my illness as a fight. It doesn’t make sense to fight yourself. It’s just that some of the cells of our bodies are not behaving in the way we want them to behave. We have extraordinary power over how our bodies’ cells behave. If we get anxious and our blood pressure rises, we lower our heart rate to compensate. We don’t have to do it consciously, indeed we can’t do it consciously. If we get too cold, we start our muscles shivering to generate heat. Similarly if we get infected with a virus, we mobilise our immune system to fight the invader, and almost always win. When we break a bone, we don’t have to tell our body how to heal itself. Built into the DNA in every cell in our bodies is the blueprint for fixing itself when things go wrong, for developing into an adult, for producing children.
But in MS and cancer, something goes wrong with the message. If we can do all these other things, why can’t we control our bodies’ cells and stop the process going wrong when it does? The truth is that some people can. Countless case reports exist of patients terminally ill with cancer who go home and make a complete recovery. If they can do it, we all can, if we can work out how. It only has to happen once to make it possible. The body has a tremendously effective ability to heal when it is in balance. The difficulty is in quietening the mind long enough to allow the body to return to this natural state of balance. This is where meditation comes in.
Fear Versus Faith
One of the ways in which this important energy we need for healing can be wasted is when we are consumed with fear. In many respects, fear is the opposite of faith. MS is a frightening disease, particularly when first diagnosed. Most of us want to live a long, healthy life. So often we hear people say ‘I hope I drop dead with a heart attack’ or ‘I hope I die in my sleep after a healthy life’. The fear of incapacity and a long drawn out demise is distressing for most people. Yet that is precisely what comes to mind when given a diagnosis of MS. Suddenly the wheelchair comes into view, and being fed, and catheters and so on. But most people, when told, are comparatively well. It makes no sense to spend some of the precious time we have now, when we are well, consumed with worry about what might be when we are not well. Worse, using that energy worrying, robs us of the energy we need to heal ourselves.
My great friend and mentor, Dr Ian Hislop captured it perfectly: ‘The principle is straightforward. You have to replace fear with faith. Faith in yourself, your future, and perhaps in something which transcends both.’
Hope
This leads to the associated concept of hope. There is no such thing as false hope. There is only false ‘no hope’. While statistics help us describe the outcome for a particular group of patients, they are quite useless for any individual patient. There are always those that do better, and those that do worse than the statistics. There are always extraordinary survivors, no matter how bleak the outcome, or how advanced the disease. We can always have real hope that we will have a similar course. This is especially true for MS which is such a variable disease. We know that there is a group of people who do very well, those with so-called benign MS. At the very least, why shouldn’t we hope that we will be one of these people? How much better is it for someone to live positively in hope, than negatively in depression, when there is a real possibility that they won’t deteriorate.
The problem with telling someone that she has six months to live, or will be disabled within two years, is that it may become a self-fulfilling prophecy. The doctor’s relationship with the patient is charged with such authority, and patients usually do their best to please their doctors, that patients will often live out exactly the script they have been given. By giving patients this false ‘no hope’, we weaken their resolve, we literally take away some of their power to heal the illness.
One more thing: Jelinek just published a book called Overcoming Multiple Sclerosis which looks promising. Here’s the synopsis:
Overcoming Multiple Sclerosis offers real hope for people with multiple sclerosis (MS). MS is a serious, progressively disabling neurological condition for which current medical treatment is not particularly effective and has many side effects. Professor George Jelinek, an experienced medical clinician and researcher, provides a genuine alternative. Through an exhaustive, evidence-based analysis of medical research, Professor Jelinek reached the surprising conclusion that MS is a disease largely determined by lifestyle factors. He has demonstrated that people with MS who modify their diet, sun exposure, exercise habits, and other aspects of lifestyle can stabilise the illness, and potentially recover. This book, now with around 700 references, consolidates and summarises all relevant recent research on what can be done to recover from MS. It is not only a major reference work for people with the illness and their relatives, but its scope and evidence base will appeal to a professional audience of nurses, doctors and other health professionals. Professor Jelinek’s experience with his mother’s death from MS, and his own diagnosis in 1999, lend an urgency and compassion to this meticulous work. His recommendations will change the lives of thousands of people with MS and support their loved ones.
You can order the book here. I’ll be ordering my copy today as well!
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I can’t tell you how wonderful it was to read this post today. I’ve had a relapse lately and am scared to death, but continuing on to make my life better. I’m in GO mode to try to set MS at bay. I’m definitely going to order this book an continue to follow your site. You are an inspriation ~ Thanks for picking me up!
lori – i have been there and i totally understand. i’m sooo happy and humbled to know that this post made an impact on you. if you want to continue with the inspiration and keeping your MS at bay, i highly recommend checking out the interview with ann boroch from a few weeks ago – just click on “expert angle” on the tags on the right and it’ll come up. i’m sure you’ll find it very valuable as well.
wishing you lost of healing,
karen
I disagree with many of your claims for several reasons. When I was first diagnosed it was mild. I wasn’t very worried about it, continued to work, was on a DMD, and went on with my life. My symptoms started to get worse, I stayed positive and kept working. I kept doing all I could, would not give into it but yet it got worse. I’m no longer able to work. I have an excellent doctor who has helped me a lot.
We do not have complete control of our bodies. If there was truly a cure then doctors would be using it and there wouldn’t be do many people living with it.
It’s commonly known that with MS you can remain symptom free for a very long time and appear to be “healed” when you really are not.
hi laura. thank you for taking the time to comment. i agree and acknowledge of course that people can be symptom free for periods of time and then have relapses, absolutely. that is the definition of relapsing-remitting MS, which you obviously know. but i also believe that healing is absolutely possible. notice that i didn’t use the word “cure”, but certain lifestyle changes and emotional/psychological work can create the environment in the body for healing to take place and for symptoms to abate. the changes i’m talking about, however, take massive dedication and willpower – often a complete overhaul of a person’s life, inside and out. it’s a multi-faceted approach, not a magic bullet by any means, and it takes time.
that’s the first reason doctors are not using it. they don’t have the knowledge, it’s not a part of their training, it’s not being encouraged by the pharmaceutical reps that they’re in contact with, and it’s not particularly attractive to patients. most people are not willing to make the changes required to heal in this way.
another reason is that doctors are trained in western medicine, the basic tenet of which is that symptoms need to be suppressed with pharmaceutical drugs, without addressing the root cause of the illness. doctors are largely ignorant about the huge benefits and amazing impact of diet, and they are not trained in the use of supplements, nor the detoxification tools that are essential to anyone with MS (or any illness, for that matter). as far as the psychological aspect, thinking positive is great but for most people with MS, the change that needs to take place is deeper and usually requires addressing and resolving the thought patterns that have contributed to illness in the first place.
i am not anti-doctor and i think it’s really wonderful that you have a doctor that you trust that has served you well. i just understand that they are coming from a very specific school of thought with very specific training, and in the case of an illness like MS, i consider them to be one tool in a larger toolbox, not the only tool. i also don’t believe we have complete control of our bodies. i don’t believe in absolutes like that. i do believe that we can control the food and chemicals we expose ourselves to and the internal chemicals we bathe in as a result of our thoughts, and that these things either add to or subtract from our body’s ability to heal.
if you have any interest in discussing this further i’m happy to. i wish you well.
warmly,
karen
My wife was diagnosed with MS over thirty years ago. The internet is magical in finding new and useful information. A few months ago she was suffering significant dementia and inability to move her right leg. The internet helped me discover the uses of Vitamin D and other nutritionals, she is now on Low Dose Naltrexone (very important), and she enrolled in a Stanford study on CCSVI, aka the Liberation procedure developed by P. Zamboni in Italy, and which may be a new paradigm. Three months into the LDN she has begun to show improvement. Good luck to you all.
Very truly yours,
Louis Bartfield
I have had Relapsong Remitting MS since 1997 and discovered Prof Jelinek in 2006 – this has been the most important discovery in my life. His book should be given to each and every patient diagnosed with MS as the evidence is simply and concisely presented for the lay person. No magic, no voodoo, no gimmicks – just good honest science.
If anyone deserves the Nobel prize – he does.
Hi
I relate quite a lot to Laura’s post. I was symptom free for 15 years after my first symptoms, then had a very disabling attack and have been gradually deteriorating since then.
I do think it’s a good idea to try everything you can so I’ve been following a strict diet (minimum sat fats, lots of fish, veg and fruit etc etc)and taking supplements (eg vit D, vit B complex, fish oil, flax oil and a few others!).
I’ve recently started meditating to maybe that will help my state of mind eventually.
Maybe, just maybe, this will slow down the progression of the illness but I can’t see how the damaged myelin can repair itself. Maybe much of the information out there on the internet and through books like that of Dr. Jelinek will help the newly diagnosed but I tend to think that, for those of us who have suffered considerable damage to our myelin, there is no hope of actually getting better.
So, very good luck to all you younger people who are starting out on this journey but I think it may be too late for the likes of me and that is where I think I am relating to Laura’s post.
Very Best Wishes,
Karen
Hello Good People:
Myelin will repair itself. My wife was diagnosed with MS in 1976 and is now 65. She is Secondary Progressive, whatever that means, I think the categories are meaningless fantasies of neurologists who think they can write. Maybe fiction. Four months ago she was experiencing dementia, and could not move her right leg. She is now walking 40 feet to the bathroomn with her hands being held, and she is starting to use a walker. In six months she will be walking with me at beach. I’m 85 and had four back surgeries, and I am now walking hills. Here’s the cure for M.S.: l. LDN 2. Swank or Jelinek diet. 3. Heavy Vitamin D 4. Other nutritionals. 5 exercise 6. Mental and emotional healing from friendship, love, psychotherapy, or whatever – they all substantially give all persons the emotional support we need 7. The Zamboni procedure. Isabel is 90% blocked in right jugular, very defective in left. Example of Isabel’s recovery from dementia: remembering San Francisco Giant’s lineup better than me, and a somewhat sharp wit directed at a few of my defects. Myelin repair will take place over time with good blood supply, I have seen a study that suggests this can significantly occur within nine months, I can’t remember all the studies I’ve read. The Interferons do more harm than good and studies indicate anti-bodies do damage for up to fifty-nine months after cessastion. When I took Isabel off Avonex her neuro was crestfallen. I think he’s a genuine guy, but sometimes I think he is too concerned with retirement funds from I know not where. Good blood supply is essential, and I have argued with wanting Isabel to have Niacin intake to reduce HDL’s, so we have compromised with small amount. I believe I have connected a lot of dots. We are in the STanford Zamboni proedure and the neuros at UCSF and even Stanford itself is fighting this. Sell your Biogen and Bayer stock. I hope I have helped, I have a passion for this and would like to spread the word to others. I’m personally strong as a horse at 85 and run my motel business in Central California and other properties. You don’t do well in an economic downturn if you don’t have common sense -oops, here comes an Isabel needle. Anyone can call me, I’m in the Santa Cruz, Ca. phone book.
Best wishes and hope to all
Louis Bartfield
karen, I was diagnosed in 2008, but first started showing symptoms in 2006. I’ve been on meds since diagnosis. Have not gotten this disease under control. Had four flares last year with my biggest one in February of this year. Have not been back to work since because it’s not been safe for me to do so. I’m frustrated… many medication changes. kg wrote about how she has been under control with diet and supplements. Where can I find out more about this. There’s too much information on the internet, much of which is conflicting and I’m lost trying to understand. Can you direct me here? Appreciate any help. Thanks.
Hi Donna. Thanks for writing. I recommend checking out the interview I just did with Prof. George Jelinek – it’s very inspirational and informative and outlines his program for getting well. You can check out the excerpt I just published from it in my latest blog post. I highly recommend this for you specifically because it discusses the efficacy of the drugs. You can check out his website at http://www.overcomingmultiplesclerosis.org. I also suggest setting up an appointment with Ann Boroch. She’s amazing and will give you a diet and supplement regimen that will help tremendously. Her website is http://www.annboroch.com. I hope this helps. Don’t hesitate to write if you have more questions!
Wishing you the best,
Karen