Unhinged Episode #019: A New Hope - Unhinged

Unhinged Episode #019: A New Hope

by Ed 1 Comment
Unhinged Episode #019: A New Hope

After a long three weeks of relapse, Doug is finally starting to emerge from the darkness. In this episode, Doug recalls some of what he was feeling during that time… the anger, the frustration, the hopelessness. We also respond to a couple of emails we received about Episode #18: Relapse Part 2 – The Call. Apparently, the frankness and reality of our last episode struck a chord with some listeners in a good way. Hearing that our show has actually helped anyone is a huge validation of everything we’re trying to do. Thank you!

Lastly, we talk about Doug’s recent magnetoencephalography (MEG) session, where multiple settings were dialed in on his DBS, then his brain scanned. Being able to image his brain activity with differing DBS settings should hopefully provide some insight into what exactly the DBS is doing and how his brain is reacting. Now we wait for the analysis of his results.

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  1. Karen Gross
    Wow! You could have been describing me! Your listeners' comments describe me too. Living in bed, not showering or brushing my teeth, living in pajamas. My depressive episodes don't last nearly as long anymore, but I had about two years of almost constant depression when the physical pain of what would be later diagnosed as Parkinson's disease made me leave my work in a library -- I couldn't hold a book or turn pages or type .... That started in about 2001 when my kids were 6 and 8, my husband worked long unpredictable hours so I was parenting from bed. Before the DBS I had to endure psychiatric testing, which apparently I failed the first time. They sent me to a psychiatrist and I had a year of individual and group sessions to help me cope with pain and inability without going back into that depression again. Then I went through all of the testing again, and this time I was accepted as a candidate for the DBS. We have chatted on the DBS Facebook page at least once, and you sent me to this page and I have listened to a few of your podcasts and I can so easily relate to your experiences, although I have the benefit of the diagnosis of a physical disease that people can see, and relate to as "that disease that Michael J. Fox has" ... I am writing these comments as I listen to the conversation, so it could be a bit disjointed. I can also relate to Ed's struggle with weight, so I am both the fat one and the dysfunctional one. I have gained almost 100 pounds since this health crisis began. It doesn't help that I have been using ice cream for medicinal purposes at least once a day. Exercise is a viscous cycle where every time I find something I am capable of doing, I hurt myself and physically I get worse. I can also relate to making commitments and appointments and then having to bow out at the last minute because I am dystonic or dyskinetic, or bradykinesia (formerly 'poverty of motion'), or otherwise incapable of leaving my bedroom. My symptoms usually come and go fast enough that some people think I am just faking it. Even my doctors just thought I was a hypochondriac. You probably can't tell from this stream of consciousness, relating to a conversation I am listening to, but I am a writer. I have one novel out, and right now I am working on something more autobiographical called Confessions of a Professional Hypochondriac. You mentioned over on FB that you could send me some info on MEG neuroimaging. I have to decide soon if I want my battery replaced or removed. I would love some help to figure out if my DBS can be programmed in a way that helps me. Thank you for sharing your shit online. I have a gardening analogy that I repeat often: In everyone's garden a pile of shit is dropped. You can choose to sit on your pile and complain about the smell, you could look around and compare your pile to everyone else's, or you can spread it out and grow flowers.

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