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I did a presentation for the Ohio support group last week about my family’s Myotonic Dystrophy (DM) journey and I got such positive feedback about the difference that my Blog posts are making. It's very rewarding. Thanks for the responses that all of you make. And even when you don’t respond, thanks for reading my messages. Creating food for thought and dialog in our heads and with others is why I write my posts.


I recently had someone share with me the difficulty of managing her household with the effects that DM has on her family members. I decided to share the following thoughts with her and therefore, I am sharing them with you.


The most impactful "aha" that I had was many years ago when friend told me that it's my job to make myself happy, not my husband's. She said all that our husbands want is for us to be happy. In a way this realization created a fork in the road for mine and Kent's relationship. For many years we became basically parallel roommates where he got a few extra benefits. I lived my life and he lived his. My goal each day was to do what it took to keep myself happy and fulfilled.


I thought it must feel empty for Kent. Our relationship felt pretty hollow, as far as I was concerned. But, looking back, from his perspective, nothing had changed except that I was happier. He went about his commitments, both with his career and his religion. I didn't do any religion. I just focused on my children's needs and my Avon business. I hired a housecleaner but I was still the one responsible for meal preparation. My life became my own and I became happy and independent.


I know that we each have different situations in the way our households function. I don't claim to know how to make it work for you but I wondered if the thought about who is ultimately responsible for our happiness might be helpful. In a way, our taking responsibility for our personal happiness is about “taking care of ourselves”.


The other thought that I would like to share with you is the realization that when Kent doesn't carry through with what I ask him to do it's not out of resistance or spite. It really is a block in his brain. Most of the time when I can remember that he isn't resisting me, therefore it isn't personal against me, then I can go to him and remind him of the task. He usually responds well. That being said, it takes a lot of energy on my part to be the manager of my household. But, when I realize that I am the only ones in my household that has a fully functioning "executive" in my head, I start to realize that everyone else in my family is like a worker bee who can't see the whole picture and needs to be guided by me.


Even without DM, this is true when we are raising children because it isn’t until the 20’s that the executive portion of the brain starts to mature.


We don't have to do all of the managing if we can come up with techniques like timers and charts that help them manage themselves. But ultimately our family members aren't capable of being "managers" or "executives" so that defaults on our shoulders.


I am always looking for research about DM and the brain. Studying the research helps me to be more accepting of my family members and their limitations. We are all doing our best. The bright side of my family members is their dry wit and the ability to reflect back at me a different way of being than I could have imagined. Here are a few links:


Myotonic dystrophy type 1 (DM1), or Steinert's disease, is the most prevalent muscular dystrophy in adults, affecting at least 1 in 8,000 people worldwide. It is a multisystemic disorder with effects in muscular, ocular, gonadal, cardiac, endocrine, and neurological systems. Although the congenital onset form of the disease is often associated with significant intellectual impairment, adult-onset DM1 is characterized by average or low average intelligence quotient, often accompanied by impairments in attention, memory, visuospatial and executive functions, hypersomnia, and behavioral problems

Archives of Clinical Neuropsychology, Volume 32, Issue 4, June 2017, Pages 401–412, https://doi.org/10.1093/arclin/acx008


DM is a progressive muscle disorder but from a cognitive point of view DM is also characterized by progressive frontal cognitive impairment. The awareness of cognitive and behavioral symptoms may help to understand why patients with DM1 and DM2 may not function as well in their work-related and family-related activities as expected by their muscle disability. There is a coexistence of a dysexecutive syndrome.

https://air.unimi.it/retrieve/handle/2434/212108/256405/NEUROL%20SCI%202007-Sansone%20V.pdf


Self-awareness in psycho-social activities is poor including reporting about their independence and social situations.

https://pubmed.ncbi.nlm.nih.gov/27044540/


DM individuals present with reduced awareness of the effects of their disease and its progression, defined as anosognosia (Anosognosia is a neurological condition in which the patient is unaware of their neurological deficit or psychiatric condition). This leads to a delay in diagnosis and treatment of their symptoms. The researchers believe that a deep knowledge of this aspect will be useful for management of patients with DM1, also for guidance in occupational and social interventions.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4820880/ Orphanet J Rare Dis. 2016 Apr 4

Mental impairment, executive dysfunction and avoidant personality traits have been described in myotonic dystrophy types 1 and 2 due to extensive white matter involvement in all cerebral lobes, brainstem and corpus callosum. Depressed mood and fatigue are present even without predominant white matter affection (early disease stages). Sleepiness and fatigue constitute major complaints in myotonic dystrophy type 1 and type 2.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3235566/ Brain. 2011 Dec;134


Thanks for the honor of sharing our journey's together,

Ann




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