change of plans and hope is in the air!

Well to spare you all the details that discredit certain individuals, I will just jump to the body of this blog. We have had a slight detour on our journey. The new decision now is to do a Baclofen Pump Test Injection to try and help with the spasticity that my dad experiences. His Dystonia is slightly different from 'typical' (though no 2 cases are alike) Dystonia. He experiences more muscle spasms than constant and continual contractions. Dad's legs aren't always drawn unless he is in the middle of a Dystonic Storm. Even during the storms, there seems to be periods of relief, and then the muscles will spasm, creating excruciating pain. It is still quite concentrated in his lower extremeties and only during extreme spasms does it go up into the extreme lower back area. Because of this spasticity, we all have great hope for the pump to relieve that.

"What is a Baclofen Pump?" and "What does it do?" you ask! Well, what great questions! ~*disclaimer - i am not medically trained, but speak 'simple English' and try to explain procedures and equipment how it makes sense to me*~ The best way i know how to describe this is to compare it to a combination of an insulin pump (for a diabetic) and an epidural. The Baclofen pump, like an insulin pump, is permanently inserted into your body and continually 'pumps' or drips the medication Baclofen in to the lower lumbar of the spine as an epidural.

baclofen pump diagram I found on internet

Now, my very next question was and from others usually is, how will a pump into the spinal column help correct a neurological disorder that takes place in the brain? Again, very good question! Go on a journey with me through the 'misfiring' of Dystonia. In our brain, we create millions of signals a minute that travel from our brain, down our spinal cord, exit the spinal cord at the nerves, and the nerves send the message to our muscles to actually DO something. When an individual is suffering from Dystonia, the brain, itself, is misfiring, therefore sending bogus messages to the muscles to contract or spasm at infrequent and spontaneous times creating spastic movements or permanently drawn or 'cramped' muscles that never release or relax. When one takes botox injections (my dad took these for years), it essentially turns the muscles off that are receiving the wrong signals, disallowing them to cramp or contract or even spasm as the brain is incorrectly telling them to. After a while, though, the effects of Botox can no longer be effective in certain individuals.

Typically, the next step if you have more spasticity to your Dystonia is a Baclofen Pump. What this does, is the medication Baclofen (a medication that is used to treat spasticity) is constantly 'dripped' into the spinal column at the specific vertebrate that the affected nerves are at. So as in my dad's case, the baclofen will be placed in the lower lumbar where the nerves that send signals to the legs exits the spine. When this medication is dripped onto those nerves, in a similar way that Botox works, the bogus signals that are sent to the legs will be neutralized, not allowing the signal to go to the muscles telling them to contract erratically. They permanently attach the tubing to the spine and the pump is inserted into a fatty region, usually in the left or right lower abdomen.

Now as in everything with Dystonia, nothing is the same, alike, 'typical', etc. so we are actually unsure if this will even work. So on the 23rd of this month, we go for a 'test shot' (my terminology - not a medical term!!!) where they just do a single injection into the spinal cord and you lay there flat for about 3 hours and hope, AND PRAY that results show up. This is a procedure that immediate - or fairly quick - results are seen - so we will know that day within a few hours if this will be an answer for my dad - you will all know soon!!! FINGERS CROSSED, PRAYERS LIFTED UP, and HOPE IS IN THE AIR!!!!!!!!!! My dad is claiming Psalm 121:1-2 "I lift up my eyes to the mountains - where does my help come from? My help comes from the Lord, the Maker of heaven and earth."

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!