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Why we need to stay ahead of our doctors! December 21, 2013

Posted by manonamsion in Uncategorized.
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The most popular post I ever wrote was entitled “‘If the Swank Diet works, why hasn’t my neurologist told me about it?’ (or, Why the Man on a MSion is not some kind of nut)”; it still get a lot of hits off Google when people search for the Swank Diet.  Why?  Because if you are new to MS, it’s likely that you haven’t yet learned that while our doctors want to help us, the nature of medical education and research sometimes gets in the way.  I was put in mind of that fact when I read a great blog post on the Overcoming Multiple Sclerosis website by my very wise friend Rebecca Hoover.  In her post, entitled “Suddenly patients are ahead of their doctors!”, Rebecca explains both the very minimal training that doctors receive on nutrition, and the stunning 17 years it takes, on average, for new discoveries to become part of medical practice.  As pointed out in one of the comments on the post, Dr. Swank started his study over 63 years ago and published his findings decades ago.  We don’t have decades to waste – we need to be healthy now!  This is why resources such as Overcoming Multiple Sclerosis and Rebecca’s fabulous and informative blog are so important.  So I want to thank Dr. Jelenik and everyone at OMS, and folks like Rebecca, for getting the word out.  It would be a terrible thing to learn about the Swank Diet and OMS program in 17 years . . . while sitting in a wheelchair!

Don’t just sit there, do something! July 26, 2010

Posted by manonamsion in Exercise, multiple sclerosis, swank diet.
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So it is summer, and you may have noticed that I haven’t been posting much . . . and this one will be a short one.  This is my first summer on the Swank Diet (I started last September), and it is nice to be spending my summer over 35 pounds lighter!  While I still have a way to go, I have way more energy and I’m using it to ride my bike and get exercise every opportunity I can. 

Multiple sclerosis does not mean you can’t exercise; in fact, it makes it more critical.   Yes, we must get adequate sleep; you will know what works for you (for me, it means at least 7 hours every night).  Yes, some of us are heat sensitive, and we need to be sensible.  But getting out in the sun to get some exercise (not to the point of exhaustion) will let your body manufacture some natural vitamin D, while keeping your body in shape.   Good advice for anyone; great advice for those with MS.

I wouldn’t be the Man on a MSion if I didn’t give you the scientific facts on the benefits of exercise for those this MS, but I’m going to let Dr. Jelinek do the heavy lifting today.  I’ve got to get back outside!!!

Eating well while eating to be well . . . June 13, 2010

Posted by manonamsion in multiple sclerosis, swank diet.
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How many times have I heard something like this: “Oh, I could never give up cheese [or beef or ice cream or etc. etc. etc.]?”  Pretty much every time I introduce someone to the Swank Diet!    Well, I wasn’t sure that I could do it when I first started, but I was sure that I can’t give up walking!  And if an ultra-low saturated fat diet is the way you need to eat to stop the progression of multiple sclerosis, giving up some of the foods I loved was what I needed to do. 

Now that I’ve totally changed my diet over the last 10 months, I will never go back.  I actually really enjoy the way I eat now.  Fruits, vegetables and whole grains are the foundation of my diet.  I still can’t belive that I haven’t eaten a bit of cheese in almost a year now!

I recently got a great e-mail from SJ, a reader of this blog.  Here’s what she had to say:

“I’ve had MS for four years, was incredibly ill for the first two years then my mother encouraged me to read Dr Jelinek’s book. Wow, is all I say. I had a last supper consisting of a farmyard of animals and haven’t looked back.  Two years later, I’m in better health than ever. But you’ll know this story, it’s yours! And well done both on sticking to the diet and on publicizing it.

“So your blog inspired mine – and I’m about to release a blog of recipes based on the diet.  I’ve always been a good cook (well, people eat my food and come back again, so….) and I’ve been looking at a lot of vegan sites and I think we could use one that basically tells everyone, in one central base, how to eat brilliantly on this diet. 

“Like you, I’d feel so honoured if just one new person comes onto this diet and changes their life in the way we have.  But the greatest challenge is getting people to change the way they think about this diet and give up things like cheese and meat (I had such a problem for a while, but two weeks into the diet I was super super healthy already).  Fish meals are awesome (especially seafood), and I’ve been experimenting for the past year with baking cakes, as well as clever ways to achieve things with fish etc.”

Well, SJ has delivered!  Her new blog, My MS Free Life, is terrific.  Her subtitle says it all: “Gives up favourite food. Gets back life! Sets about recreating favourite food. Has cake and eats it!”  Take a look at her blog, and you can have your cake and eat it, too.  I made her fat-free potato chips (or as my English friends say, crisps) this afternoon . . . and my teenagers loved them so much, they spent the evening making more!  Now if only SJ can invent fat and dairy free cheese that isn’t disgusting . . .   Oh well, we can’t have it all.  SJ and I choose our health!

Are you a driver or a passenger on your road to health? June 3, 2010

Posted by manonamsion in multiple sclerosis, swank diet.
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Are you a passive patient or are you an advocate for yourself in the medical system?  I’m always surprised by the intelligent people I know who follow doctors’ orders without asking any questions or even understanding their medical condition, the medications they take or their doctor’s recommendations.  My diagnosis with multiple sclerosis in 2008 was my first real window into the reality of the health care system – and the degree to which your care is only as good as the doctor you select and the research you do on your own.

My diagnosis story is a good example.  My first symptom was a bout of optic neuritis, which was misdiagnosed by a retina specialist as vitreous separation.  When my vision suddenly came back, but my hand went numb, I was sent to a neurologist (who was not an MS specialist).  After several tests, she was stumped.  When I asked about the results of the MRI she had sent me for, she told me it wasn’t in the file.  Minutes later, her assistant handed her a sheet of paper and she looked at me and said “You have MS.”

Over the next 10 minutes, she proceeded to tell me that I needed to check into the hospital immediately for 3 days of tests and IV steroids (notwithstanding the fact that my hand had been numb for over two months due to her delays); that I would need to take a weekly shot (Avonex) that would put me out of commission for a couple of days a week with flu-like symptoms (with no discussion of other treatment options); and that I needed to find a less stressful job that would let me work from home at least one day a week when I had flu-like symptoms and other MS problems.  I thought my life as I knew it was over.

I was lucky to have a close friend who is a doctor who, that night. called around and found me a terrific MS specialist in New York City.  That doctor spent two hours the next day with my wife and me, discussing MS, treatment options, prognosis, etc.  After talking with the doctor and doing my own research, I went on Copaxone immediately, which has minimal side effects (mostly annoying site reactions).  I don’t have time in my life for flu-like symptoms, and I don’t have much faith in the interferon drugs, for reasons that Dr. Jelinek details well.  I didn’t need to be hospitalized, and I certainly didn’t need to change my career plans!

I continue to have a great relationship with my MS specialist, and my appointments every few months are a dialog.  I bring lots of questions, and he is very open to having an intelligent discussion with a well-informed patient.  Needless to say, at this point, I think I am more knowledgable about MS than the original neurologist I saw.  I also do my own research, and that’s how I found the Swank diet.

So here’s the bottom line: don’t be a passive patient.  No one cares more about your health and your future than you do, and you owe it to yourself to become knowledgable about your condition and your options.  If your doctor isn’t willing to have a dialog with you, I recommend you find another doctor.  Also, if you have access to an MS specialist, rather than a general neurologist, you are much more likely to get up-to-date medical advice and recommendations.  (Note that I use the words “medical advice,” not “doctor’s orders.”  While I certainly don’t suggest you ignore what your doctor recommends, you shouldn’t just be taking orders.)

Beyond your doctor, however, you should be doing what you can to learn about and understand multiple sclerosis.  Most doctors are focused on the drug therapies they can prescribe, often because they are not well-informed about nutrition and lifestyle factors, and frequently because they do not think you will change your behavior even if confronted with the need to do so.  But be careful in your research – there is a lot of junk out there and some of it can hurt you.   As you know, I am convinced in the value of the Swank diet, but before I proceeded with that, I read Dr. Swank’s book and the secondary research provided by Dr. George Jelinek.  As an accomplished doctor who is also living with multiple sclerosis, George Jelinek offers us the unique perspective of someone who truly understands the medical profession, medical research AND the immediacy and urgency of proper care that only a patient can really understand.  His book is a fantastic resource, detailing his opinions on all the treatment options, from the most conventional to some that sound really out there.  His website is terrific, and I’m delighted that his book will be available in the United States soon.

I am not a doctor, and I will never offer you medical advice.  But I do urge you to drive the car instead of being a passenger.  As for the road I have chosen, I understand that many will not take that fork in the road.  But you aren’t making that decision if you haven’t educated yourself – you are simply choosing to let someone else drive, closing your eyes and heading down the road with your eyes closed.  Read Dr. Jelinek’s book or website and then make your informed decision.  Be the driver.

Be well,
Man on a MSion

Optimism – The Wonder Drug May 25, 2010

Posted by manonamsion in multiple sclerosis, swank diet.
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Is your glass half full, or is it half empty?  As people living with multiple sclerosis, we have the choice of concentrating on the living or concentrating on the MS.  I choose to concentrate on the living – and on doing what is in my power to live well.  (Preview: Next week’s post will be on being your own best advocate in the medical-industrial complex.)

I recently received an e-mail from a reader of this blog that really made me think about the importance of taking a positive outlook.  This reader told me that he appreciates the positive encouragement to eat right and be well, but he wonders whether I, and others who advocate the Swank diet, are sugar-coating our realities for your consumption to “sell” you on the diet.

Fair question.  Because I’ve been very dedicated to maintaining my own health through diet and exercise, I don’t spend a lot of time focused on what’s wrong with me.  I am the first to admit that I have no idea – and no way to know, short of playing dietary Russian roulette – whether my symptoms have been mild because I have a mild case, because of the Swank diet, because I take Copaxone, or because of some combination of all those factors.  But I’m not going to stop Swanking to see what happens, because even if the diet is doing nothing for my MS, it is surely helping me ward off heart disease, stroke, cancer and diabetes.  And it’s also helping me get to my appropriate and natural weight – for the first time in my life – without feeling deprived.  (Who knows, maybe I’ll end up as hot as my friend Rebecca Hoover says she is!)

What I can tell you, though, is that it simply isn’t statistically possible that all of Dr. Swank’s patients were lucky and just happened to have mild cases.  And it also seems really unlikely to me that George Jelinek, Rebecca Hoover, Julie Calder and others on the Swank diet all just happen to have mild cases (and if you read their stories, some did not have mild symptoms before going on the ?Swank diet).  If you don’t want to make the effort, admit that to yourself, rather than coming up with reasons why the diet doesn’t really work.

Dr. Swank didn’t promise a fountain of youth or magical regeneration.  His results showed that people with minimal progression when they started the diet had only a little more progression after 34 years.  (People with more progression slowed their progression too, but didn’t get better than their starting point, so starting early is key.)  So I expect that I will have some progression and some bad days, but my goal is to be able to walk without a cane or wheelchair and to dance at my children’s (and maybe grandchildren’s) weddings.  The Swank results say I can probably make that happen (if you haven’t clicked on Swank results to read Dr. Jelinek’s summary of the stunning results, you are cheating yourself out of the best treatment for MS – no current treatment, or treatment in development, even comes close).

But to answer the question directly: yes, I have symptoms of MS (and so do many others included in the links above).  My left hand has been numb for almost 2 years.  I can’t urinate on command and I sure as heck can’t make it through the night without a couple of trips to the bathroom.   I play the “is it age or MS” game when I forget something.  Sometimes my balance isn’t perfect, but I was never a graceful guy anyway; I recently bought an elliptical because I can’t use the treadmill without holding on, which worsens the numbness in my hands.

So there you go, inquiring minds.  Now you know, but don’t expect me to talk about it again.  I don’t focus on what are really minor inconveniences, or even some more significant ones.  I don’t know anyone my age (mid-forties) who isn’t starting to feel aches and pains, or worse.  Some of these are probably attributable to their poor diets and lack of exercise, and at least I know I am protecting myself against that.  We need to keep our eyes on the prize – maintaining mobility, mental faculties and quality of life.  If you want a real pity party, you can find plenty of other MS blogs for that!  I ain’t pitiable, and neither are you unless you choose to be! 

As much as I hate the cliché, I may have MS, but MS doesn’t have me.  Yes, I’ve made major lifestyle changes to be proactive and control my MS.  But I view MS as my wake up call, telling me that I had to stop abusing my body.  As I’ve said to my wife, MS may be the best thing that ever happened to me and I’m glad it came before diabetes, heart disease, stroke or cancer.

Be well.

“If the Swank Diet works, why hasn’t my neurologist told me about it?” (or, why the Man on MSion is not some kind of nut) May 9, 2010

Posted by manonamsion in multiple sclerosis, swank diet.
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19 comments

 The Swank Diet has been proven to be more effective in preventing disease progression than any drug on the market – or in clinical trials.  Let me repeat that: the Swank Diet has been proven to be more effective in preventing disease progression than any drug on the market – or in clinical trials.  Your probable reaction: “How can that be?  If that was the case, everyone would do it and my neurologist would have told me about it.”  That was my reaction, too.  And that’s why I dug in and looked for secondary sources that back up Dr. Swank.  I found that in Dr. George Jelinek, who explains brilliantly on his website, Taking Control of Multiple Sclerosis, and in his fantastic new book, Overcoming Multiple Sclerosis, why the medical establishment has disregarded the most effective treatment option for multiple sclerosis.

It isn’t because your neurologist doesn’t care about you or because he is in cahoots with the drug companies.  It is simply that he or she has been trained to look at medical evidence in a certain way, probably has no training at all in nutrition, doesn’t think that patients will follow lifestyle and diet advice, and maybe hasn’t ever even heard of the Swank diet.

Dr. Swank studied a group of his patients over a period of over 34 years and tracked their disease progression.  Those who followed his recommendations, primarily to reduce saturated fat intake to below 20 grams per day, were called “good dieters” and those who violated these recommendations were called “poor dieters.”  It is worth noting that even the poor dieters reduced their saturated fat far below the intake of the average American (which has only gone up over the ensuing decades, by the way): their saturated fat intake averaged 29-32 grams per day, while the average American consumes over 100 grams per day!  So following the Swank diet means following the Swank diet, not dabbling in the Swank diet.  Going for “moderation” simply does not do the trick.

The Swank results?  Stunning.  Disease progression among good dieters was minimal over a 34 year period, while disease progression among poor dieters was, quite frankly, scary.  Those with minimal impairment who followed the diet remained minimally impaired; those who didn’t follow the diet were likely to end in a wheelchair, bedridden or dead.  I’m not going to reproduce all the results here, but I highly recommend you read the page on Dr. Jelinek’s website that provides the detail.  It convinced me, and I haven’t consumed more than 10 grams of saturated fat on any day since I read it.

How does this compare to the CRAB drugs?  Well, you know the statistics there: they generally reduce exacerbations by about a third, and while there seems to be some effect on overall disease progression, it is sketchy.  And the fact is that some of the studies of the interferon drugs are questionable.  (By the way, I do take my Copaxone, every day.  We need all the help we can get, and I’m not anti-drug where I believe the benefits outweigh the side effects.  If you are currently on an interferon drug, however, you should take a look at the concerns being raised about long term impacts of use of interferon drugs.)

 So why isn’t your doctor telling you to follow the Swank diet as if your life and health depended on it (since it does)?  Well, as Dr. Jelinek details, the startling results were buried by criticism of the methodology of Dr. Swank’s research.  This amazing study over decades is not considered good science by many doctors because it was not a double-blind study – both the doctor and the patients knew who was on the diet and who was not following diet.  In the world of drug testing, this is a flaw because of the possibility of both researcher bias and placebo effect on patients, and under this view, the success of the diet is not “proven.”  But ask yourself how on Earth you could ever do a double blind study of such a comprehensive life style change over any time period, much less a 34 year period.  While the scientists may consider this flaw insurmountable, as someone with the disease, stunning results achieved over more than three decades is enough for me!

Your doctor likely also thinks that people won’t make such dramatic lifestyle changes.  I say, prove them wrong.  In any event, they should be offering you the opportunity.

I go to a support group for men with multiple sclerosis that is sponsored by my local chapter of the MS Society.  I’ve made great friends there who are smart, active and accomplished men.  None of them follow the Swank diet.  Many of them tell me that they are impressed with my willpower; a few roll their eyes when I talk about the diet.  Deep down, I think that they consider me a bit of a nut, and I believe that is because they have not examined the amazing results achieved by Dr. Swank.  Or it may be possible that the neurologists are right that people won’t change to prevent disease progression.  And I suppose I understand, because I didn’t change my diet as my weight and cholesterol went up, despite the risks of heart disease and diabetes.  Somehow, the gun to my head that is MS did the trick, once I learned about the Swank results.  That’s why I am writing this blog: in the hope that I will reach at least one person who will look at the data and make the decision to save their own  mobility and life.  I hope that person is you.

I am here to help you.  Post a comment or send me an e-mail (manonamsion@gmail.com) and I will answer your questions, or refer you to where you can get answers.  Please do this for yourself.