My family, 4 children (now adults) and husband, all have Myotonic Dystrophy (DM). They were diagnosed 25 years ago. Before I had my children I went to the University of Utah and got a bachelor’s degree in Child and Family Relationships. What a blessed synchronicity. This background greatly prepared me for the unique behavior of my family. In the beginning of raising my family I thought that we were weird and I couldn’t figure out why. I blamed myself. I thought that I wasn’t parenting well enough. After the diagnosis of DM and learning about the cognitive effects of DM I have come to realize that we weren’t weird because of poor parenting, it was because of the DM.
The individual inadequacies in communication are a big part of the uniqueness in my family and their behavior. These probably come from the lack of self-awareness that is created from these cognitive effects. Each one of my family members have issues in communication. It’s not just about what they are trying to communicate, it’s also about what is communicated to them.
The cognitive effects of DM typically create anosognosia (a neurological condition in which there is lack of insight into the neurological disease). This means that when my family members are told by the doctor how to treat their condition they very often have good intentions of following the doctor’s directions but they don’t follow through once they are home. For others with DM it means that they don’t think that they have a problem and therefore aren’t interested in the doctor’s advice. I’ve heard many DM individuals state that they don’t go to their annual MDA sponsored doctor appointments because all that the doctor is going to tell them is that they have DM. I’m assuming that they don’t realize that the doctors are trying to guide them.
The lack of insight of my family members is why I go with them to their doctor appointments. Once they are home it’s up to me to follow through with them and hold their hand to start implementing the doctor’s directions. Of course, I could choose not to direct my family but if I don’t direct them then they don’t make the positive changes in their life that they need to improve their quality of life. Once my family member has implemented an activity they will usually keep doing it and I only need to check in once in a while and make sure that it is in their routine.
Chad has plantar fasciitis. We got him inserts for his shoes and new solid shoes but it still didn’t go away. The physical therapist told him of some stretches that he could do for the back of his leg that would make it go away. It took a couple of years of visits to the MDA clinic where he would visit with their physical therapist in order for him to realize that they weren’t just giving him extra exercises. They were actually teaching him how to make his plantar fasciitis go away. In order to remember to do it he had to add it to his routine. His routine is something that he does each day and to interrupt his routine is greatly stressing for him and all of my family. Learning how to work with my DM family has taken a lot of learning. Getting mad at them can be a typical response but it doesn’t help the situation because they can’t help it.
Kent recently ended up in a very uncomfortable situation because of his lack of awareness. He has been in the hospital so many times and when he is there he tries to become friends with everyone that interacts with him. I think that the intimate activity, catheters, enemas, etc. have blurred his boundaries. When Kent gets his blood drawn they ask me to wait outside of the lab. When he was getting his blood drawn about a month ago he wanted to know the technicians name and her badge was turned around. She probably had told him her name and he hadn’t remembered it. So instead of asking her again he reached over and turned her badge around. A couple of days later he received a very serious letter of chastisement. It said that this was a warning and that any crossing of these instructions could bar him from ever coming to the Huntsman clinic. Kent was flabbergasted and deeply ashamed because his intentions were very innocent. The next time that he visited with his doctor he was also chastised. The doctor was very appropriate and I was with Kent this time so we were able to have a conversation about the experience. One of the new guidelines is that I or another family member has to always be with Kent at his oncology visits.
At recent appointments I have noticed a few other teasing comments on Kent’s part that could border on crossing individual boundaries. Kent was told by his doctor to treat his oncology visits as business instead of friendly. It’s really sad because Kent can be quite charming but not only does Kent need to be more careful, I now need to monitor his behavior. If he says or behaves inappropriate I need to correct him and explain to the technician or nurse that he has a cognitive disorder.
There is not enough awareness of DM and its cognitive effects. I am available for individual or group coaching. I am also available for giving speeches in professional settings to educate about this very misunderstood disorder. You can sign up for a 15 minute call to discuss my availability by going to myotonicdystrophycoach.com. I look forward to hearing from you.