Updated: Apr 23
Cluttering and DM
As a newborn Michael was in the NICU for just under a month due to respiratory problems. He came home on oxygen but was weaned from that after a couple of months. Except for the first couple of months after his difficult entry into this world Michael seemed to meet the normal milestones in development. He was a happy easy-going child and to this day he is still very easy-going. As a developing baby and toddler he jabbered a lot. It wasn’t until he was 2 ½ when a friend who also happened to be a teacher shared with me her observations that we noticed anything out of the normal development.
My friend told me that Michael had a full vocabulary but the reason that I couldn’t understand him was because he wasn’t able to say the plosive consonant sounds (English has six plosive consonants, p, t, k, b, d, g). In other words all I could hear were the consonants which makes everything run together. At this point we got Michael in to speech therapy.
Michael was in speech therapy off and on until he was 20. One of the things that he tried when he got older was a SpeechEasy. This looks like a hearing aid but it slightly delays what the wearer hears. This is an attempt to make it so that you feel like you are in a crowd. They have found that stutterers don’t stutter when they are saying something in a group setting, like the Pledge of Allegiance. This helped Michael for a few months but then he got to where he ignored it and went back to speaking unintelligibly.
Michael was diagnosed with Myotonic Dystrophy (DM) at the age of 14. When he was around 18 we found out that there was an ENT (Ear-Nose-Throat) doctor that would perform a pharyngoplasty on him. This is where they surgically roll up a piece of tissue that is in the back of the throat. This is to change the shape and function of the soft palate making it easier to close off the soft palate to help with voice projection and making plosive sounds. Michael’s older brother Warren had this surgery because he liked performing on stage and wanted it to help strengthen his voice. Warren also wanted to be a teacher and hoped to have a strong voice. The pharyngoplasty seemed to work well for Warren.
Michael’s pharyngoplasty didn’t seem to help his speech, neither with projection or intelligibility. We eventually learned that Michael had poor strength in his lungs. Along with myotonia that makes it so that his lips don’t do what he wants them to do, he also has the inability to make his lungs expand and contract with typical volume. In other words he has poor muscle tone in the muscles that support his lungs. This is very classic for those with DM. Now we knew what mechanisms weren’t functioning in a typical manner thus making the control of his speech difficult. Michael had so many years of speech therapy and he remembered all that he learned about speech but he couldn’t apply it. I always chuckled about the fact that Michael could probably teach speech therapy (that is if he could be understood) but he couldn’t apply it to himself.
Michael graduated at the age of 32 with a Bachelor’s degree from the University of Utah in Mass Communication. It is ironic that he loves communication but his body can’t make it work for him to be understood.
A couple of years ago we were able to get Michael, Chad, and Kent on Palliative Care. One of the great things about this is that they bring services to his home. This made it possible for him to start receiving speech therapy services again. We’ve even been able to get him on maintenance speech therapy. This means that he doesn’t have to meet the normal goals of improvement. Speech therapy improves his overall health because it strengthens his ability to eat safely.
Michael’s most recent speech therapist, Amy, shared with him a book, Too Fast for Words by Rutger Wilhelm. Michael gave me a copy of it for my birthday last week. I just started reading it. Before I got a copy of the book, Michael had been sharing with me about it. Too Fast for Words is about a unique speech issue called "Cluttering". "Cluttering" is different from stuttering but many people assume that they are the same thing.
One of the many ideas in the book is that individuals who Clutter have brains that process differently than stutterers. Michael really feels that the information about cluttering applies to him.
From what Michael has shared with me it seems that many of those with DM might struggle from "Cluttering". If you or your family members have DM and speech issues, you might want to check out this book, Too Fast for Words. You can also check out their website https://toofastforwords.com/
Michael, who has DM and a college degree in Mass Communication, wrote this. It’s about pros and cons of having a speech disorder.
Pro: You will rarely be called upon to give a speech or say the prayer unless the people in the group hardly know you (If you don‘t like talking in front of people, no problem).
Con: You are rarely called upon to give a speech or say a prayer unless people in the group hardly know you (How else are they going to get to know you?).Pro: If you stumble and stammer when talking to an attractive member of the opposite sex you can blame it on your speech disorder. Con: You and I both know that’s not the ONLY reason you failed to impress that person who causes your heart to skip a beat. Pro: People will understand if you aren’t as talkative as some people, they might even appreciate the fact that you aren’t talking their ear off Con: People don’t always know it if you are giving them the “silent treatment.” Pro: You don’t get asked stupid questions. Con: You don’t always get to ask your stupid questions. Pro: You don’t have to talk to those annoying people. Con: You might be perceived as one of those annoying people (plus you might miss out on talking to amazing people.) Pro: You can tell if people are interested in what you have to say because they’ll ask you to repeat what you said, repeat what they understood, and/or sometimes try to fill in the blanks. Con: You have to repeat yourself several times and hear what you say repeated, and sometimes it‘s repeated incorrectly Pro: You might become amazingly proficient in another form of communication to compensate. Example: writing ;) Con: You had to find other ways to communicate in the first place. Pro: If you‘ve been to tons of different speech therapists you can practically teach speech therapy. Con: It’s hard to get clients if you aren’t licensed and/or don’t have a diploma claiming as much. (That’s when you get out a printer and the fancy writing, DIY diploma anyone? [Tip: Make sure you use an obscure college, you don‘t want anyone calling the school to check your degree])
For more of Michael’s writings go to https://writingismyfirstlanguage.blogspot.com/