I was pleasantly surprised during a recent trip up to Powells Books in Portland to find not only a decent selection of books about MS, but even one that dealt with the subject of cognitive challenges in MS. Because cognitive issues are something that I struggle with, and haven't really been able to find a whole lot of information on, I was pleased to get my hands on this book. The cover was even totally appropriate. A boy standing in the missing piece out of the middle of a huge puzzle. Nice stereotypical metaphor, I dug it.

Jeffrey N. Gingold wrote this book after having been diagnosed with MS and finding the cognitive issues he was facing weren't really being properly addressed by his primary neurologist. Upon finally having some neuropsychological testing done and having the issues brought to the forefront, he was inspired to share his story. Justifiably so, there aren't really any other books out there which offer an insight into the way that cognitive issues can cause isolation and even feelings of complete frustration and fear, at least not that I've found thus far. This is a book which walks us through the process of his diagnosis, which can be a bit repetitive, but mainly focuses on the advent of his cognitive dysfunction. He walks us through the way that he was able to address it, work through it, and begin to use it as a tool for advocacy.

While I am not going to deny that I would have loved to have been reading a book like this written from the point of view from someone a little more like me, I guess that’s sort of like asking the rain to be purple during a drought. Even though I am not a lawyer finding myself struggling to find my words in the middle of an opening argument, I can certainly relate to this "loss of presence". There were many moments reading through this book where I finally sort of felt like, "wow, this is for real, this is not all in my head" so to speak. Hearing someone speak to these issues that I had been dealing with, and struggling to try and express this in intelligible form to others, was all here. I think that Gingold does well to give some examples of the way that slowed cognitive processing leads to not only frustration with ourselves, but also a loss in self-esteem as well as social isolation. 
 
Gingold doesn't leave us just feeling sorry for ourselves, or allowing himself to wallow in pity. It is obvious there is a process we have to go through when dealing with new and seriously strange cognitive issues, of which we may not even have a name yet. Gingold helps us learn how to work through it. From making sure that our needs are being addressed and understood by our doctors, to giving suggestions for ways in which to work with these cognitive setbacks. It is blatantly obvious that cognitive issues are still not being properly addressed by many doctors who are treating MS patients, and it is absolutely vital that we have a pretty good understanding of what is happening in our own bodies and minds, in order to get the care that we need from our doctors. He points out well that second opinions or even third are sometimes needed if we feel like we're just treading water with our neurologists.  
 
As Gingold describes it, cognitive issues can seriously become a sort of "mental wheelchair". Yet another invisible symptom which can leave us feeling totally misunderstood and completely lost in terms of connection with others. The statistics do show that fifty percent or more of people living with MS are dealing with slowed cognitive processing, which affects everything from "word fishing" to a complete "loss of presence". The aspects of these issues, when looked at from the perspective of a twenty-something can also be especially frustrating in a social aspect. When you are young and not trying to be a social misfit, it can be frustrating when you feel like you can't keep up. I think that Gingold does as a good a job as possible to explain these issues from his perspective, and I think that even those of us who aren't married with children and a high paying career can still relate. He gives some great examples of ways to lessen the blow of symptoms, and to be advocates for ourselves, making sure that our voices are being heard, and that we aren't shutting ourselves off for fear of being seen as a total "head case". 


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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.


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So I have been on the prowl for decent books relating to MS, but it was during an internet search on Dr. Stanley Cohan (my soon to be specialist) that I stumbled upon a book called MS and Your Feelings, published in 2007, which he wrote a foreword for. It turns out the author Allison Shadday is a patient of Dr. Cohan, and it just so happens that she's a licensed clinical social worker. After having been diagnosed, she quit working as a home health social worker, and opened up shop as a practicing counselor for those living with chronic illnesses. What I love about this is that not only does Allison know what it means and how it feels to live with MS, but she deals day in and day out with others who are part of the same club.  

  This book is specifically aimed at helping us deal with the emotional aspects that seem to crop up, sometimes suddenly, with this disease. Not only do the emotional issues come from simply dealing with our day to day symptoms or perhaps a current exacerbation, but a multitude of various factors play into our emotional well being. Shadday does well to include some of the less discussed issues that play into how we really "feel" as well as the biggies that aren't so uncommon among us, like anxiety and depression. 

   Shadday walks us through everything from coming to terms with a diagnosis, to recognizing and accepting the grieving process. Each chapter is designed to handle a specific issue which relates to how we feel. Along with delving into the various issues that cause our feelings to go haywire, she also includes a total of 13 journal exercises, some of which are more like questionnaires. You may not need to use all of them while you read the book, but it's nice to know they'll be there if you need them in the future. The exercises on our personal "MS experience" as well as the "grief questionnaire" were both super helpful for me. Getting all this stuff out was something that I really needed to do, and the questions she asks are spot on for helping us work through some bottled up junk.  

   If you are someone who finds the words of others dealing with MS comforting, or in hearing their fears/concerns, then there's a little of this in here for you as well. On top of this, there are also some tips for ways of managing stress and anxiety. Some of these I will pass on for now, such as biofeedback for example, although there was one little tip which proved helpful for me, especially after having been so recently diagnosed. In chapter six called Stress and MS: How to Soothe Yourself, Shadday examples one of her clients who had used the idea of thought containment. Although this may sound pretty simple, and in fact it is, she would use an imaginary box each night, to contain all of her thoughts which were swimming around as soon as her head hit the pillow. For me, the evenings were the absolute worst (and sometimes still are) following my diagnosis. I would lay in bed wanting nothing more than to just sleep, but instead my mind would begin racing with various "what if" scenarios. So I decided to try this whole visualizing/thought containment advice, and low and behold, it actually worked. I would envision this box, and then I would surround it with all the random thoughts I was having on that particular night, and imagine putting them all away. I would lock the box, and put my thoughts away until the next day. This way I could deal with them at a time when I wasn't attempting sweet slumber. So I haven't replaced my occasional evening vodka tonics with thought replacement, but on those nights when I'm particularly anxious, this is a tip I make good use of.  

  One of my favorite aspects of the book came in Chapter seven, called Identity Crisis: Building Self-Esteem. Shadday writes in regard to the saying "you are not your MS", "These words are meant to provide encouragement, but they can ring false. The truth is that MS can seriously erode one's sense of self. It forces us to question-sometimes daily, sometimes hourly-who we are and what we're capable of; the answer often varies." This was pretty awesome for me, because at times it seems like we can go around singing until the cows come home about how "we have MS, it doesn't have us", but seriously, just "having" MS makes us feel different, I know it does this to me. There have been times where I have thought about the day I found out I had MS, and I have wished I could just go back in time, to have one more day where I didn't know. The saying "ignorance is bliss" has taken on a whole new meaning to me. My sense of self has changed in the last three months. Going from working and taking full time classes just one year ago, to having days where a few hours of shopping leaves me feeling like a senior citizen trapped in "perfectly functional body" has made me question my worth at times. Cognitive issues have also left me feeling... well, dumb. Shadday does not fail to include both fatigue and cognitive issues as just a few that can leave our perhaps once positive, or at least not quite as faltering self-image, in the dust.

    Another important aspect of this book came for me in chapter eight, called Good Grief: Recognizing the grieving process. Well, I had quite a few enlightening moments while reading this chapter, but one of the points that really hit home for me was in regards to us gaining something from our losses. Although we've been diagnosed with this disease that's going to plague us for the rest of our lives (a bit dramatic, yes) we are still able to sort of gain something from it. After discussing the ways in which a fellow MS'er had found the good in something bad, Shadday wrote, "This isn't to say that having a chronic disease makes everyone's life better. It makes it different and painful and difficult, but once we beat our chests and shed our tears over what we've lost, we must begin to actively search out what we might gain." Even though I don't always want to feel like I have to be "making the best of it", unfortunately, there isn't really any other option. I know that I don't want to be the "sick" person too busy wallowing in their own misery to do anything of importance on this planet.  

  The great thing about this book, is that it's information we can actually use. It isn't simply a bunch of doctor schpeel or new age mumbo jumbo (which I sometimes secretly love), but it's real, useful information. I am thankful I found this book when I did. Granted, I don't know how differently I'd be handling things had I not found it, but I know that it has proven useful to me in more ways than one. I could sing the praises of this book for days, but I will stop and simply say, READ IT. It's one of the good ones.

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