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."

Progress is 100 steps forward and 90 steps back

Have you been there? Have you ever been in a place of progress in anything: school, relationships, building a house, painting a bathroom, etc. where you think you are doing GREAT and all of a sudden, 'something' happens that makes you regress? At that moment, either, you fail a test, have a huge argument, the contractor bails, the paint spills or anything else can happen and you think that all of your progress is just for naught.

Well, this is where we were with my dad a couple of weeks ago. We were making great strides with therapy, my dads strength and confidence were growing by the day, and we were setting goals and accomplishing them - until last Tuesday. Then, we had "a bad night". By this I mean we were up for hours with pain, spasms coming in at 3 a minute every minute, and there was no relief in sight. We finally got enough medication in him to stop the pain and spasms but in turn, it 'knocks him out' for about 5 days. Then we have to re-start the process of building strength again, we had cancelled therapy for the entire week and so we start over with all of that, etc. We all admitted we were in a position that our forward progress was hard to see when we were in the process of going backwards.

It is so difficult to watch and to have hope beyond explanation or even belief and then slide backwards so far that your hope is only a mere glimmer in the distance. We were doing great, building strength, and dad was gaining courage each day. We were making steps forward and had finally left the bedroom and made his way to the living room by way of wheelchair for the first time since mid-April. Then Tuesday happened.

We, remembered, though, that Dystonia is a monster that is not easily defeated, but defeatable, none-the-less. We backed up, allowed the Dystonia to calm down, allowed his body and brain to 'reset' over the course of a week, and then decided that we were NOT going to miss out, lay down, and be defeated. Instead, we grabbed the reins of this disorder and began to steer the ship again. The storm came and we got thrown off course, but we never lost sight of the destination - WALKING AGAIN! SO, what did we do, but on this Wednesday, dad took steps for the first time since mid-April, Thursday dad got IN the shower and had water run over him for the fist time since mid-April, Friday he walked to the living room and back for the first time since mid-April and he at dinner at the kitchen table for the first time since mid-April, Saturday dad sat on the couch for the first time since mid-April for almost 2 1/2 hours, and we will be keeping on.

Now, if you have Dystonia, you might find this post frustrating as you haven't had great progress soon and you are still sailing off course somewhere in the midst, but try not to lose the glimmer of hope! We are celebrating today as we never are promised tomorrow, and we are doing what we can to continue the strengthening and encouraging and, as of now, the Dystonia is cooperating. We will continue to fight, continue to strive, and continue to hope for better tomorrows!

YAY for the progress and we are celebrating, tonight, the end of a great week!!!

a rainbow in the sky

As I type this, I have just come inside from admiring the most beautiful rainbow I truly have ever seen! The colors in it were magnificent and the pure majesty of it was something that for a moment, took my breath away!

a sign of hope - 6/6/2013

A rainbow.... a sign of hope.... how appropriate for Dystonia Awareness Week in my life! We have had a pretty rough week with dad and during this week, I have seen so many signs of hope for this disorder and the future of the awareness of the disorder, I truly have hope! Back when my dad really took a significant turn for the worse with his Dystonia and began the process for DBS, I took a step as a personal promise and dedication and it has taken a turn for the better! Because of dying my hair blue, I have gotten such great response over it, I started a "Go Blue" movement on facebook. This movement has drawn people from all over the world to take a moment to wear something blue and to inform just one person about what Dystonia is! People have done everything from their hair to their toenails, to their clothing to wearing blue ribbons in honor of the thousands of people that suffer from this disorder!

Seeing the people that have joined together to make one big movement has been moving and beautiful! I am beyond grateful and honored of all the people "jumping on this bandwagon"! If we would and could all concentrate our efforts into one single movement and all in sync, what a difference we could make and what a mighty force we would be! We have started out in the right direction; let's finish this year strong; and let's make next year even bigger!