Wednesday, April 24, 2013

a first...

So today was a first for my dad's Dystonia. He ended up in the hospital this morning with spasms and pain that were unbearable and uncontrollable. This is part of the uncertainties of Dystonia. Spasms that take your breath away and never let up to be able to catch your breath can and do occur at any time. We have always heard about Dystonia patients that end up in the hospital with spasms and pain that is unbearable, but we never thought we would be there.

They are considering this episode of what my dad is having to be a Dystonia (or Dystonic) Storm. What an incredible description, because as with any storm, you have dark clouds, torrential rain, and winds that erratically blow and occur. As with this that is going on right now, my dad finds himself in a dark place mentally, torrential and unending pain, and spasms that erratically come and go within minutes of each other. The incredible part is that they think this storm has been created by a medication that my dad was trying to wean off of, that was OBVIOUSLY doing more than we realized. They have ordered him back on the medication and we are still aiming to the doctors appointment on the 2nd of May to start the DBS process.

The incredible thing out of all of this is that with some Dystonia patients, this medication doesn't even work, but with my dad, it obviously has triggered an episode that we never could have fathomed!

What is the point of me telling you all of this? Well, the point is that the fact that every person's Dystonia is individual and none of them react the same way to the same medications is one of the reasons that we need to advocate for information and education on this disorder. The ER doctor was NOT very familiar with Dystonia, the needs of Dystonia patients, or even the reasons and types of medications necessary to help control the spasms.

How do we educate the already educated? How do we publicly and without offense, have this discussion and open this discussion up to those who 'should' already know about this but don't? This needs to be researched and thought about and the best way is for YOU to start the conversation! Be your own advocate or be an advocate for those whose voice is being choked by Dystonia!

1 comment:

  1. I am so sorry to hear about your dad's dystonic storm. Been there, done that, unfortunately, and my husband and I have educated SO many medical personnel about dystonia and DBS that we have lost count. I am to the point where I will do just about anything to avoid going to an ER, as I know they won't have a clue what to do when I get there. Hope they are able to get the spasms under control quickly, although he WILL be very sore afterwards, too. Just think of having run a marathon continually for hours or even days. When muscles that are not used to that much activity are in such constant stress, the result is pain once they relax. Please feel free to email me if you want to talk or if I can help in any way. I know your dad from the dystonia group in Bham, although I have not been able to attend much lately. My email is
    Ramona Edwards