Going public with my posts and thoughts brings comments from others, once in a while someone disagrees. I recently had a lady comment on my thoughts about the effects on the cognition from Myotonic Dystrophy (DM). She said "I’d be cautious in what you think of as DM." I took that to mean that she thought that it shouldn’t be assumed that DM is the cause of these cognitive deficits.
This feedback stimulates a lot of thinking on my part. What right do I have to make statements when I am not a doctor? I value doctors very much. They care about their patients. I believe that the reason some are hesitant to agree with my statements is because they need to use research. Documentation through research is the only way that science and medicine can truly know what cognitive effects there are from DM.
In the meantime, while waiting for the results of research, we who either have DM or live with someone with DM need help and answers. As I have lived with my entire family with DM and also have run multiple support groups I have made observations and have had experiences that have patterns. I wrote my book because I felt that we needed to hear from each other about our experiences. That is also why I post regularly. Someone needs to share what it’s like to live with and/or experience DM. So, why not me?
I have thought a lot about the comments and I also acknowledge that what I post impacts a lot of people. So I do want my thoughts and comments to be conscientious. I agree that we don’t want to use the awareness that DM can have a negative effect on cognition as a weapon. We don’t want to go around telling our loved ones that their opinion isn’t valued because they have some cognitive effects from their disorder. We also don’t want to go around blaming them for deficits in their lives. It is very important that we recognize the value of each individual and that even when they have limitations they still have a lot to offer our relationships with them and also a lot to offer others in their community and in society.
In my experience with my family we have always been a little different than the rest of our community. My family doesn’t show enthusiasm either in their personality or in the expression on their face. I couldn’t figure out why I was always having larger reactions than my family and I figured out that I must be dramatic so I went to great effort to tame my enthusiasm and my reactions. The easiest way for me to subdue my reactions and enthusiasm was through psychotropic medication (Prozac, etc.). In our extended family on my husband’s side I was also always more emotional and reactionary than the rest of the extended family. By taking my Prozac it became easier for me to fit in.
Occam’s razor is the theory that the simplest explanation is the one to be preferred and that answers should not be multiplied beyond necessity. When I searched for information on Occam’s razor it was stated that it can be overused and become an excuse for not looking for more answers. But those of us who live with DM have looked for answers. We have searched, read, gone to specialists, etc. looking for answers. After years of searching we finally came upon the diagnosis of DM. As we have interacted with others in the DM community, we have finally found answers.
It wasn’t until my family was diagnosed with DM that I learned that their flat affect was most likely consequence of their disorder. They also didn’t have motivation to pursue solving conflicts and even the enthusiasm to seek out information. My family was diagnosed in 1998 and at that time there was very little known about DM. But as I immersed myself in learning about DM I started learning that there were cognitive effects. Again, I was the only family member pursuing understanding of this disorder. I felt like such an odd person. Why wasn’t anyone else interested in the effects of this condition? I ended up being alone and isolated.
Once I really understood that a diagnosis of DM can explain their flat personality I felt so empowered. At that point there wasn’t the research available like there is now. But with that awareness I was able to stop trying to get my husband to be more involved. I was also able to stop making it mean that he didn’t care.
With the insight of Occam’s razor I believe that the easiest explanation is that the cognitive effects are from DM. It’s not that I didn’t look for answers elsewhere. In fact there were many years that we didn’t have a diagnosis. During the years of no diagnosis I was always seeking out explanations of why I was so odd and different. I went to lots of therapy. Also, relationship counseling. I wasn’t trying to blame our personality differences on a disorder because I didn’t know that there was a disorder. But I couldn’t figure out why such a basic part of myself which is curious and seeking for connection with my loved ones was so different from the rest of my family.
I think that the reason I get feedback about not diagnosing everyone with DM as having cognitive effects is because there are the occasional person that doesn’t seem to have these effects. Though, in my experience they are few and far between. It’s got to be hard for those with DM that don’t have the cognitive effects to be categorized as having cognitive effects. But in the meantime, until science and medicine get more research, the rest of us are living very confusing lives with nowhere to turn for answers except the DM community.
Once I learned of the diagnosis and the potential cognitive effects from this disorder, I could breathe a sigh of relief. I was able to stop blaming myself for my curiosity and I could accept it. In fact, I was able to realize that my curiosity was normal and healthy. My family’s lack of it didn’t make them wrong but it explained why we were so different. It is only with curiosity that we seek out and find answers. My family didn’t have the ability to be curious.
I was judging myself for being so different from my DM family, and I assumed that they were judging me too. Come to find out, they weren’t judging me, in fact they were apathetic about our differences. My family members are some of the most accepting people out there. They are a delight to live with. But, their lack of insight makes it hard to get help and understanding for them unless those of us who are unaffected look for answers.