
Margaret Blackstones book is meant to be a sort of run through of your first year after diagnosis, if you didn't catch that in the title. Blackstone has MS, and her copious amounts of research have also earned her the title of "expert". Rather than using chapters, Blackstone divides this book up into the days and months following your diagnosis. I am also slightly lacking in the patience department, so rather than taking it day by day, and month by month, I read it front to back in about a week. I suppose a week is better than a day. Of course this is one of those books that you can keep on hand and refer back to for various issues, so I don't think reading it all at once will hurt. Blackstone begins by dealing with the basics such as what MS does, how it is diagnosed, and how we can deal with the first weeks of a diagnosis. She is pretty blunt about the fact that we really don't have any idea what exactly causes MS, which is something that although obvious, doesn't always get mentioned in such detail. What I did like about her explanation for this was how thoroughly she had researched what it definitely was NOT. She ended on the note however that research continues to be most focused on the prospect that "viral or bacterial infections trigger the process..."
On day seven, she discusses the issue of coping with fear, which is obviously something that only if we're alien, will we experience just the first week. However, she discusses different types of fear, and the importance of accepting them. Fear goes deeper for most of us than I think any book can quite do proper justice, although she does touch on one of the biggies that we all hate, the "unknown". She discusses the different types of drugs which are on the market, which you can find better research and info on other places, although I suppose the point is that if this is the first thing you read on MS after your diagnosed, it's an overview of sorts. She discusses wellness which includes the importance of diet and exercise, and a brief overview of some of the more popular supplements which many believe MSers will benefit from. She does however give a pros and cons sort of list for these, which seemed relevant to me. After diagnosis I went out and got a ton of supplements, which other than constantly forgetting to take, made a conscious decision to quit taking some of them, after reading this. Another positive note on her commentary on dieting. Rather than going nuts on giving up carbs or dairy or meat, or your left ovary for that matter (or maybe a testicle), she discussed the importance of a balanced diet. Cutting out certain types of fat, and the huge importance of protein. I am much less opposed to a diet where I am simply eating balanced and healthy, rather than living on grass that has healing powers.
In week three, Blackstone attempts to help us understand the difference between a relapse, and an exacerbation, as well as going over some of the basic vocab that goes along with MS. She also talks about some of the issues that apparently may be signs of an upcoming relapse, such as a "heightened sense of vulnerability." This sounds a little hokey, although to be honest before I began my relapse in mid-November, I did have this very odd feeling that there was something wrong, and it had nothing to do with health issues, it was just a feeling. Who knows? Anyhow, a more rational sounding perspective was that fatigue can also be the sign of an upcoming relapse, although this is also pure speculation in my opinion. It seems that fatigue is one of the most common and general symptoms for MSers, maybe even chronic for some. I'd hate to think that each time I become fatigued, I was getting ready for a relapse. I do however think that if the fatigue is overwhelming, rest may be able to help curb the onset or exacerbation of symptoms.
Month two finally gives an outline on the various types of MS, coping with stress in the day to day, and perhaps making various adjustments in life that apply to you. Month four deals with issues of sex, which although applicable to everyone, may be somewhat more distressing to those of us who are in our *ahem* prime for such behavior. Moving up through month seven she goes through the "ins and outs of insurance" which is something that simply the thought of nauseates me. She also goes through making your home MS proof if you will, which may not be a must now, but perhaps could be helpful in the future.
Month eight deals with the issue of "starting a family" and some of the stats on how this affects the health of women with MS, among other issues. This is however pretty vague, and doesn't really get down to nitty gritty issue of how many of us deal emotionally with the thought of starting a family. I suppose this isn't a book about our emotions however. Month eight also deals with cognitive issues, and is slightly lacking in my opinion. Although there were some helpful tips regarding "memory and powers of concentration" I wouldn't say she really touches on the fact that this affects so many people with MS, and can be one of the most frustrating and alienating symptoms, even disabling for some. On top of being less than impressed with her coverage of cognitive issues, I have been somewhat disappointed by the lack of available information and attention given to this aspect of the disease, as it apparently affects upwards of fifty percent of us.
The last three chapters, well really months, of the book, deal with some interesting information regarding other "medication options" such as Novantrone, which is a powerful immunosuppressant, as well as the more controversial low-dose chemotherapy treatments. She discusses how some of the relationships in your life may have changed, during the first year of your diagnosis, and finding support groups. Month eleven goes into the issue of really working on being happy, which is obviously important for those of us living with a chronic illness. She looks at the possible persistence of the anger she dealt with early on in the book, and ways we can work through this nagging emotion. Blackstone then goes into a more thorough overview of the "trends in MS Research" which was particularly interesting to me. Not knowing much about Stem cell research and the big to do about it, this was the first actual reading I did on the issue, I'm embarrassed to admit. Knowing the importance it does play in the research for MS and multiple other diseases, it has inspired me to research the subject further.
One of the things that I am was somewhat put off by in this book, is the way that Blackstone is sometimes a bit vague in her description of things, perhaps working more to quell fear or anxiety in people, rather than give them the honest hard truth. On page 83 for example, she says, "Most people tolerate steroids well. Some report feeling better-even euphoric -on them." My issue with this statement comes from the fact that most people that I have ever talked to or heard about who have been on steroid treatments, don't describe themselves as feeling better or euphoric on them." In fact, what I have heard have been mostly negative experiences. This isn't to say that they may not help shorten an exacerbation or what have you, but I'm just saying. Perhaps there are some out there who have had excellent experiences on steroids, but there should also be a voice on some of the negative issues like weight gain, insomnia, and irritability. Although she touches on some of the long term negative issues involved with steroid treatments, I would have appreciated a little more on the short term issues.
On Page 103 Blackstone says, "Knowing more about your symptoms can help prevent them and avoid exacerbations." While I do believe that this can help to a certain extent, in the limited research I have done so far, it seems like this may be a bit of a bold statement. What if you've been doing everything right physically, and avoiding stress, getting loads of rest etc. and you still have an exacerbation? It isn't as if she's saying that you are guaranteed to avoid an exacerbation if you know more about your symptoms, however, I feel like she should mention that sometimes they are simply UNAVOIDABLE. There are parts of this disease, and this is an understatement, that are way beyond our means of control.
I cannot say that I didn't learn anything from this book, I definitely did. Part of the reason for this though, was the fact that I had JUST been diagnosed when I read it. I think that it's definitely worth reading if this is the boat you are in. If however you have been diagnosed for awhile, and have done even basic research, this book is probably not for you.