Book Review: “When The Music Stopped”

A few weeks back, I noticed a book at the checkout counter at Four Seasons Natural Food Store in Saratoga, NY. The title, “When the Music Stopped”, got my attention as it immediately made me hum (to myself) the tune to the lyrics “the day the music died” from the classic song “American Pie“. However it was the subtitle “My Battle and Victory Against MS” that compelled me to purchase the book. The author of the book and vanquisher of MS is Bob Cafaro, a cellist for The Philadelphia Orchestra for the past thirty years.

I was mostly interested in learning how Cafaro used food to prevail over MS. I was curious to see if he followed the Swank Diet. The Swank Diet represents the diet developed by Dr. Roy Swank. The diet is low in saturated fat and, although it is a plant strong diet, it does allow small amounts of non-fat dairy and lean meats.  During an interview recorded many years ago, Dr. Swank told Dr. John McDougall  that he allowed for small amounts of low-fat animal products to make it easier for patients to comply with the diet. He did not believe the health benefit of the diet came from these foods.

Early on in the disease process, Cafaro’s mind was not focused on battling MS, as he admits to have been in strong denial of his MS diagnosis. He did not get serious about his battle until his third MS flare-up kicked the stuffing out of him. It was at this point that he decided that he needed to arm himself against the MS scourge.. Food became an important component of his arsenal.

Cafaro followed a Swank-like diet. He went Swank one better as he ate a plant based diet that included small amounts of fish, but absolutely no dairy products, meat or poultry. Cafaro generously shares specific foods that dominate his diet. It’s no surprise that his diet is full of fruits, veggies, whole grains, legumes and some nuts and seeds. He makes some statements about nutrition that are not correct, but these are easily forgiven. He’s a world class cellist, not a nutrition geek.

I enjoyed learning about Cafaro’s dietary discoveries, but what was even more enlightening was his description of:

  • The horrors of MS
  • The power of the mind in recovering from serious illness
  • The horrors and limitations of MS medications
  • How the stories of some famous people were instrumental in his recovery.

The Horrors of MS

Cafaro provides details of each of his three MS attacks that occurred over a period of eight months. The attacks became progressively worse. The symptoms he experienced during his third attack can only be described as horrific. They included:

  • Partial loss of vision in both eyes
  • Extreme dehydration caused by excessive vomiting
  • Impaired walking
  • Inability to use hands for performance of normal daily activities
  • Partial incontinence

His vision had become so bad that his Neuro-Ophthalmologist offered to write him a note for permanent disability. Cafaro’s declination of this offer marked the beginning of the toughest fight of his life.

The Power of the Mind in Recovering from Illness

Anyone who doubts the mind’s ability to affect changes in the body has not thought very seriously about the phenomenon known as “the placebo effect”.

What is a Placebo?It is a substance or other kind of treatment that looks like a regular treatment or medicine, but is not. It’s an inactive treatment or substance. Typically, the person getting the placebo doesn’t know that the treatment isn’t real. Sometimes the placebo is in the form of a “sugar” pill, but a placebo can also be an injection, a liquid or even a procedure. It is designed to seem like a real treatment, but doesn’t directly affect the illness. In research studies, those receiving a placebo are considered to be in the “control’ group.

What is the Placebo Effect?Even though they don’t act on the disease, placebos affect how some people feel. This happens in up to 1 of 3 people. A change in a person’s symptoms as a result of getting a placebo is called the placebo effect. One explanation for why some folks get better after taking a placebo is because they expect to get better.

Those who get placebos in medical studies serve an important role. Their responses help provide a good way to measure the actual effect of the treatment being tested. The placebo group provides an important baseline with which to compare the treatment group. It helps researchers see what would have happened without the treatment, though both groups may still have some short-term effects based on what the patient expects. For instance, illnesses that sometimes go away on their own might be thought to get better because of the medicine, unless there’s a placebo group and those people get better too. On the other side, bad effects that were going to happen anyway, or that occur from some unrelated cause, may be blamed on the treatment unless they also happen to people in the placebo group. One of the criteria that the United States Food and Drug Administration (FDA) looks at when determining the efficacy of a treatment is how well that treatment fares compared to a placebo.

Many drugs that are approved show a statistical benefit compared to placebo, but have little to no clinical significance.

The Horrors and Limitations of MS Medications

Cafaro describes the typical medications that are used in the treatment of MS. His description of the brutal effects of his interferon injections made me conclude that the treatment wasn’t much better than the disease. He shows results of the comparison between various MS medications and placebos in preventing exacerbations (relapse). The results are not very impressive to this reader.

The National Multiple Sclerosis Society states that these medications are used to modify the disease course. Like most medications for chronic diseases, these do not cure the disease.

I shouldn’t have been surprised at how limited the MS medications are. I remembered watching a presentation by Dr. John McDougall a few years back in which he shares research showing these drugs are ineffective and harmful.

So the point I take from all this is that MS patients are told that the best these drugs can do is slow the progression of MS. The patient’s goal is to manage disease symptoms and the awful effects of their treatment.

Luckily for Bob Cafaro, he is not the type of person to accept such a prognosis. He decided to dedicate his life to achieving what is thought to be impossible – cure himself of MS.

He concluded that the placebo effect is evidence that the mind can play a powerful role in treating disease. He committed himself to learning ways to equip his body for the challenge ahead of him.  After some intense research, he discovered the importance of proper hydration, proper diet, vigorous exercise, and stress reducing activities . In addition, he sought help from Dr. Ronald Hoffman, a medical doctor known for integrating complementary medicine with conventional treatment. He is also a supplement salesman.

After having extensive blood work done, Cafaro was encouraged to take a long list of supplements which he agreed to add to his arsenal of lifestyle changes. Cafaro’s success in defeating MS can’t be denied, but we cannot be certain which of his practices had a positive impact and which didn’t. I’m very skeptical that the long list of supplements was necessary. However I don’t want this article to be about supplement bashing. If you’d like to learn about my general thoughts on supplementation, you can check out this article.

Cafaro did obtain something valuable during his visit to Dr. Hoffman. It was advice from one of Dr. Hoffman’s assistants . She encouraged him to fight his MS from every possible angle. So he decided that in addition to his supplement regimen, he would continue to take Avonex®, (his interferon medication) as both his neurologist and Dr. Hoffman encouraged him to continue it.   Cafaro’s decision to continue Avonex®, is evidence of his commitment to attacking MS from every possible angle. He decided to continue Avonex® even though he suffered bad side effects the day after each of his weekly injections.

Cafaro decided that his arsenal of proper hydration, plant-based diet, vigorous exercise ,stress relief practices, supplements and Avonex® wasn’t enough to crush MS. He knew that to achieve his goal of curing himself, he would have to build and maintain a proper mental state to emerge victorious – a mental state that made him expect to get well – much like folks taking a placebo often improve based on positive expectations. Ideas that helped Cafaro train his mind to achieve this mindset came from the stories of some famous folks – folks who achieved their own individual goals against astronomical odds.

Famous People Instrumental to His Recovery

Cafaro used a diverse group of people as role models. They include;

Cafaro compares the similarities of his battle against MS with the unique battles each role model had to endure in order to achieve his against-all-odds goal. Cafaro’s ability to clearly express how these role models emboldened his mind, body and spirit is worth the cost of the book.

He also shares recollections from different stages in his life – recollections of people, events, illnesses, injuries and even scary movies that played a role in helping to create the MS destroyer he became.

In Summary

Cafaro admits that his story is a study of one. There are no guarantees that the protocol he followed will work for each individual reader. As mentioned before, there is no way to tease out which of his practices actually helped him defeat MS. The most important message I got from this book is that a chronic disease for which conventional medicine believes there is no cure, was cured by one person. A person who incorporated major lifestyle changes that helped him go beyond managing a horrific disease, to pulverizing it. It took an incredible amount of will, critical thought, open-mindedness, toughness and persistence – but Cafaro did what many neurologists believe to be impossible.

“When the Music Stopped” is not only for those suffering from MS or another chronic disease, it’s for anyone who is trying to surmount what appear to be overwhelming odds to achieve a goal. It gets a stamp of approval from me.

Cafaro will be in Saratoga, NY for a cello performance and a book signing on August 19, 2016.

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