After a recent follow up visit with a specialist, we decided we needed to sit down and explain a few things about Mark's condition, how it affects him, our marriage, our children, and how we interact with others. Many have been praying for wisdom to know what causes his condition, grace to endure the symptoms, and a lot more. So today, Sara and Mark sat down to explain how life with Paroxysmal kinesogenic Dystonia/Dyskinesia affects our family, our ministry, and everything else.
We answer the questions of what brought this on, will our children have this condition, how do we keep Mark and everyone safe, and what are we planning to do going forward. We talked about testing, technology, and other aids to help us understand, mitigate, and hopefully overcome some of the obstacles that come with this diagnosis and what we are told to expect in the future.
If you know someone with Dystonia, have a family member with a debilitating condition, interact with adults with special needs, or know our family, you need to watch this video. There is so little awareness of this condition in general that we feel compelled to be very open and transparent with everyone so that they can not only understand, but help us as we seek to live our lives to the glory of God in the context of marriage, parenting, church, and our community as a whole.
Thanks for watching, for praying, for sharing, for encouraging. We are here to encourage and equip others and we hope this video fulfills a part of that desire. We also hope that people understand that we share our struggles because we know many others deal with conditions that are much worse, who endure much more pain, and who miss out on much of what most people consider "normal life". Mark's condition is permanent and progressive as far as we understand it, but symptoms are intermittent (daily, but not constant) and we hope this video is received as what it was meant to be: informative and encouraging.
For more videos on Dystonia, including samples of what it looks like for me (symptoms vary at times and in individual cases) you can view our playlist here-
• Dystonia Life
0:00 What do we want to accomplish in this video- awareness, updates, and how Dystonia affects Mark and everyone in his life
1:00 How it all started
6:00 Being unable to work and impacts on relationships
8:30 Exercise and "overdoing it"
12:50 Social interaction and Dystonia triggers
19:15 Hard discussions and how to handle them
21:00 What causes Dystonia?
22:15 It's not you, it's me....well, sometimes it's you (Audiology update August 17: noise cancelling won't help, we got some noise reduction headphones we are trying out and were given ideas of how to capture sound with things like tapestries and acoustic panels)
25:35 hypersensitivity to touch and other physical symptoms
29:50 You can't avoid everything that might cause problems
31:30 adapting to the needs of others and facilitating relationships with families with disabilities
32:50 making decisions and the "melting brain"
35:30 Please don't take it personally!