My family members have frustrating personality traits. In order to get anything done around my house (chores and projects) I have to direct everyone through the entire process. My family is not motivated nor can they figure out the steps required to start and complete a project. This is due to the executive and frontal lobe function impairment, the part of the brain that acts as the executive in helping us manage our lives. There are also difficulties with concentration, focus and processing speed. These effects manifest as apathy, poor motivation, rigidity, impulsivity, avoidance and depression.

My family was always apathetic and not interested in doing much. It was very difficult to get them up and out the door for school. Because I didn’t have a diagnosis for my children, school didn’t make any accommodations for them. That is why I started home-schooling my children. Their bodies were starting to mature and the extreme fatigue and lack of motivation caused involvement in school and activities outside of the home to be very difficult. Home-schooling made it so that they could learn on their personal time schedule.

When we got the diagnosis it allowed us to put our two youngest in public school where they had IEP’s (Individualized Education Plan) and many accommodations.  In first period our youngest had a chair in the back corner of the class and he was allowed to sleep through class. His choir teacher also allowed him to sleep in his chair, which she didn’t allow any other students to do. With my older children I had homeschooled them for many years not realizing why they couldn’t function in school even though they were very bright.

Eventually some of my family members were diagnosed with Asperger’s, which we later learned wasn’t really Asperger’s but actually the result of the cognitive effects of DM.  When we had family gatherings, many individuals were asleep on the couch. Some of those that were always falling asleep didn’t believe that DM affected them. Why was there this disconnect in the way that our family members perceived themselves? Come to find out, self-awareness is greatly affected in my family. They sometimes share with me that they don’t think that there is anything wrong with them. But they don’t pay attention to some important details such as they can’t hold down a job or manage their households.

At the beginning of my family’s diagnosis there was very little research and understanding of the cognitive effects of DM. This is an area  of DM that is getting more and more research but it is still a new frontier. I started researching on my own through existing conferences and support groups. I went to a Utah conference of the Brain Injury Association of America. It was overwhelming. It seemed that most of the presentations were about Traumatic Brain Injury. But, I did learn that DM fits in the category of Acquired Brain Injury. This awareness helped me to start to acknowledge some of the behavioral oddities of my family members. Instead of just wondering why my family was so different from others.

For instance, if we are out and about Kent will see someone that he recognizes, he’ll lean over and tell me who it is and frantically wave at the person. It isn’t actually who he thinks that it is and the person that he is waving to will sheepishly wave back to this man that they don’t know.

Most people that aren’t aware of the reasons for odd behavior likely find it intimidating. It has been our experience that others have avoided us. For instance, most of my family likes to talk and talk. Michael especially likes to talk but because of the effects of this disease on his breath support and his inability to move his tongue and facial muscles he can’t be understood. When he interacts with others he has a lot to say but he isn’t understood. The effects on his brain make it so that he isn’t aware that the other person isn’t understanding him. If asked to repeat himself he doesn’t slow down or in any way change what he says in order to help the other person understand him. I, myself, his mother, can’t even understand him and I have lived with him his entire life. Michael had speech therapy the first 20 years of his life and he still receives speech therapy occasionally. While he is in speech therapy he does improve his intelligibility. But as soon as the funding for speech therapy ends and he is no longer being coached on a regular basis his speech becomes unintelligible again. The local Vocational Rehabilitation program has purchased multiple devices to help him be understood. But because his brain doesn’t realize that he has a problem, he ignores the device even when it is on. Sure, they help for a little while when they are new but fairly quickly he stops using them. When we ask him to use the device he ignores us and just keeps on talking, expecting us to eventually understand him.

Learning to understand that the brain is effected and that my family members can’t help their unique behavior has increased my capacity to be patient with my family. It has also helped my tolerance and patience with other individuals that are different. My father lives with dementia. He is also deaf in one ear and hard of hearing in the other. You can understand how frustrated he must get. He can be very verbally aggressive and he says odd things. For example, recently he was at the cemetery for the internment of his daughter. His grandson said “Hi, it’s good to see you.” His response was “Do I have a choice?” It felt very personal to his grandson and caused him to shy away from his grandpa. Of course, he didn’t know that grandpa was on steroids which makes him angry and aggressive. What should we do, not take him to his daughters funeral because he has inappropriate behavior?

There are many different brain disorders/diseases, such as Alzheimer’s, Fronto-Temporal Disease (FTD), Dementia, etc. I think that DM should be listed as a brain disorder. From my perspective, if we were to realize that DM effects the brain then society might be more tolerant of those with DM. Most family’s living with this disease end up being lonely and isolated because of the lack of understanding about how if effects those living with this disease.