Managing the Symptoms of Multiple Sclerosis

Rating:
Summary: Written especially for those with MS
Review: Ably written by Doctor Randall T. Schapiro (the Medical Director of The Fairview Multiple Sclerosis Center) and now in an newly updated and expanded fourth edition, Managing The Symptoms Of Multiple Sclerosis is a practical, informative, and medically sound instructional guide to dealing with the day-to-day difficulties induced by MS, ranging from bladder and bowel difficulties, to spasticity, tremors, physical weakness, and sexual problems. Managing The Symptoms Of Multiple Sclerosis is especially commended as being a "reader accessible" resource written especially for those with MS and their medical/familial caretakers.

Rating:
Summary: Contains the seeds of excellence
Review: Symptom management is a hot issue for many people with MS, for obvious reasons. Once you've committed to taking one of the disease-modifying drugs, you are still left with the consequences of MS, an often dizzying array of interlocking symptoms. Facing up to life with MS means coping with symptoms that range from the inconvenient to the painful, debilitating, and disabling. It also means coping with the emotional fallout of both your current symptoms, and the likelihood that they will over time worsen and diversify.

I was attracted to this book because it is written by a doctor. I am reminded constantly when reading it, however, that while he is an expert on MS, he is experiencing MS symptoms only second-hand. In consequence, it is clear that on many issues, he just doesn't get it. I was also attracted to the fact that this book has been popular enough to go through four editions. This means both that it sells well, and that it is likely to be up-to-date. The world of MS research is moving so fast these days that the information in books very quickly becomes outdated. Which is, of course, a good thing provided readers keep their wits about them. Not all of the book appears to have benefitted from a rewrite, however. Parts of it were written in 1986 and are, as we will see, beginning to show their age.

It is my feeling that the presentation style of this book may run the risk of alienating a significant fraction of MS patients. The approach taken is top-down, and assumes that you need to know the mechanism (couched in college textbook terminology) of a bodily function or process before you can talk about it; but for many of the processes described in this book, it just isn't so. Often dry and technical for no good reason, it over-utilizes the passive voice. It lists a dizzying array of drugs, mostly dismissed with a few lines rather than given the in-depth description they deserve. It emphasizes the mechanics of coping, not the emotional side. In places it is downright patronizing about the emotions felt by a person with MS, a trait unfortunately shared by many medical professionals. For example, from Chapter 8, "A person with impaired mobility who does not use the right tool cannot accomplish the job of walking. Although it may be difficult at first, try not to have negative emotional feelings about using assistive devices. They are simply tools to improve mobility."

The visual presentation of the book is somewhat lacking. A significant fraction of people with MS have vision problems. I believe that this audience would be better served by a larger font size and the selection of a clearer typeface, both in the main text and in the figure labels.

The book is broken into 22 chapters and four appendices, which are divided into four major sections. The second section alone is divided into subsections, five in number, comprising of from one to seven chapters each. I am somewhat skeptical as to whether this division is of any practical assistance to the reader. The chapters are as follows:

1. What is Multiple Sclerosis? This chapter gives the standard explanation of MS, which will be of some interest to the newly diagnosed. It includes two excellent sections on "Choosing Your Physician", and "Complementary Medicine".

2. Managing the Disease Process: An excellent, if dry, description of the standard disease modifying drugs, current as of 2003. It should ideally be supplemented with more up-to-date information by the discerning reader.

3. Fatigue: This chapter is essentially the standard polemic on fatigue, including the usual tiresome lists of things you can do in everyday life to reduce the amount and effects of fatigue. These would be wonderful in an ideal world, but as many of us have to work and care for children while coping with MS, most of them seem bizarre if not totally divorced from reality. Some of them are merely condescending ("Plan ahead" and "Set Priorities" for example), others show a worrisome level of naivete (the person who wrote "Use the same grocery store on a regular basis and learn where various items are located" clearly does not do the family shopping, or shops in a quaint old grocery store where the shelves are not constantly reorganized in pursuit of a rapidly shifting and seasonal demographic), and some are antediluvian ("Use disposable diapers", honestly, does anybody in the western world use cloth diapers anymore?).

4. Spasticity: A good chapter that discusses the three major options, exercise, drugs, and surgery. I was disappointed that there was no mention of either yoga or acupuncture, which in recent years have become popular in the MS community for managing spasticity.

5. Weakness: I actually learned something about proper exercise in this chapter. I only wish that this chapter were longer than 2.5 pages.

6. Tremor and Balance: Another good chapter.

7. Paroxysmal Symptoms: At just over a page in length, I wish this chapter could have been longer also.

8. Mobility: Putting it All Together: This chapter illustrates many of the minor presentational flaws in the book. For example, one must ask oneself why the use of the word "Ambulation" in the section heading "Walking (Ambulation)"? What advantages does it bring? Isn't it a gratuitous use of terminology? Doesn't it just serve to intimidate the less well educated reader? The author shows here and elsewhere a disregard for the MS sufferer who is on a limited budget when he states "Leather soles wear with time amd need to be replaced frequently, but their advantages far outweigh this minor problem." The problem of replacing leather soles may seem minor to somebody on a physician's salary, but must seem daunting to somebody trying to live on a Social Security Disability allowance. Nonetheless, this chapter provides some excellent advice.

9. Pressure Sores: Another good chapter. Some discussion of the relative merits of some of the choices presented, such as sheepskin versus gel pads for wheelchairs, would be a useful addition.

10. Bladder Symptoms: An excellent chapter. I'm in two minds as to the applicability of the figures, however. I found them confusing. I suffer from DSD (detrussor sphincter dyssynergia) myself, and was surprised to see the disorder described but not mentioned by name.

11. Bowel Symptoms: An excellent chapter.

12. Speech Difficulties: A very good chapter that should perhaps be longer.

13. Swallowing Difficulties: A good chapter in the sense that I already do the things that he recommends to compensate for swallowing difficulties.

14. Vision: A chapter that is again too short, particularly given that many MS patients are diagnosed during their first bout of optic neuritis.

15. Pain: It's nice to see a doctor who admits that a significant fraction of people with MS experience pain. I can't begin to count the number of people with MS who have confided to me that their doctor has pooh-poohed their report of pain, responding that pain isn't a "normal" symptom of MS. The truth is that chronic pain can be debilitating and can seriously affect the quality of life for MS patients and their caregivers.

16. Dizziness and Vertigo: This chapter is again too short, and contains almost no useful information aside from a drug list.

17. Numbness, Cold Feet, and Swollen Ankles: This chapter seems to exist solely for the author to blow off these symptom. Terms such as "annoying" and "nuisance" are used over and over. Despite the author's claims (and methinks he protesteth too much), numbness can significantly reduce quality of life. This chapter would benefit from a serious attempt to analyze and advise courses of action with less condescension.

18. Cognition Difficulties: This chapter contains the usual frustrating list of bullet points containing didactic and quite impractical advice, including "make lists" (I do, but I lose them), "organize your environment so that things remain in familiar places" (but I have young kids), and "carry on conversations in quiet places" (and on which planet exactly are these quiet places to be found?)

19. Diet and Nutrition: This chapter, written by Daniel Kosich (who has a PhD), is sound but "old school", based on the traditional food pyramid. There is no mention of Atkins or other diets currently under investigation. Some of the advice, such as reading food labels, is a good idea. If your diet is the traditional American meat-and-potatoes fare, then this chapter will probabaly be an eye-opener for you. But if you show any degree of dietary sophistication, it will probably be ho-hum.

20. Exercise: A chapter with some solid messages, such as the fact that "no pain, no gain" does not apply to people with MS, but it consists mainly of pointers to other chapters, indicating perhaps that a reorganization of material is overdue.

21. Sexuality: The clinical approach in this chapter is a big turn-off. It leads me to ask whether there are ways of coping that are more sexually attractive. Although some interesting advice, such as the use of a bag of frozen peas as a sex toy, does slip through the clinical facade here.

22. Adapting to Multiple Sclerosis: An excellent chapter. It however does not mention the use of on-line forums and support groups for those unable or disinclined to join group counselling sessions.

There are 47 pages of appendices, as opposed to 142 pages of ordinary text. I'm used to the appendix being a minor organ, not almost a quarter of the organism. I'm led to wonder why these are appendices at all and not chapters? The appendices are as follows.

A. Glossary: I found the Glossary useless, neither comprehensive nor particularly well explained.

B. Exercises for Spasticity: A great section with many well-explained diagrams.

C. Transfers and Mobility: Another great section with many well-explained diagrams.

D. Resources: A somewhat shabby list of books and electronic references. This should be replaced by a web page that is updated regularly by the author.

This book contains an Index, which I applaud. So many MS books do not, which is particularly frustrating when searching later for misremembered topics. This Index was however obviously not done by the author. If it were done better, it would have perhaps uncovered some of the inconsistencies in the book, such as the subject of drinking water. The Index refers us to pp. 115-116, omitting references to fluid intake on p. 76, 81, 118, and 133. In all we are exhorted to drink "six to eight glasses per day", "8 to 12 cups daily", and "eight glasses of water per day" in three different places in the text, leading one to wonder at the disappointing quality of editing of this book.

In summary, this is a good book in the sense that it contains much useful information, but its primary weakness is in presentation. It does not appear to be designed to be read by the patients who have the very problems that it describes. It could become an excellent book if the author would take on a co-author who knows how to write for a general audience, is compassionate, and has first-hand experience with managing the symptoms of MS.


Rating:
Summary: From a survey of common symptoms to helpful exercises
Review: This updated fourth edition of Dr. Randall Schapiro's Managing The Symptoms Of Multiple Sclerosis uses clear language and illustrations to explore all the common symptoms of MS and tested, proven treatments for it; from tremor and weakness to bladder and sexual difficulties. From a survey of common symptoms to helpful exercises, Dr. Shapiro covers the latest information on MS and its impact.