Wednesday, April 6, 2016

My Story- Continued...

On my oldest son’s 20th birthday-January 21st. 2015, I flew to Georgia to the Carrick Brain Center. I had an early flight and went from the airport straight to the Brain Center. (which in hindsight was a terrible idea...I was trying to save money and ended up totally exhausted.)

I was taken in at 10:00am and introduced to Dr. Nathan Keiser and Dr. Angela Gabella.They would be the primary doctors that I would be working with and several other doctors would assist with preliminary testing. They did a series of extensive testing on my eyes, coordination and balance. They also watched me walk to see if I had gait abnormalities and had me do a series of coordination tests. After that, I went and got some lunch and came back to get the test results. After getting the results(which were shown to me with videos of my eye movements and graphs and charts and definitely makes more sense to the doctors than the patients) I took a break and went to check into the hotel. At 3:00pm I did my first round of targeted eye exercises. After that I went back to the hotel to rest and planned on having dinner but ended up getting very nauseated. I think it was a combination of stress, the testing and exhaustion all hitting me at once. For the rest of the week I would go to the center three times a day and work with the doctors doing these exercises and they would monitor my progress. The care and compassion that all of the doctors extended to me as well as other patients went above and beyond any traditional medical visit I had ever experienced. The passion and dedication to what they are doing was so inspiring and amazing to be a part of. I have wished so many times that I never got this disorder, but then I think about the experiences I have had and the amazing people I have had the chance to meet. Always try to look for the seeds of opportunity in suffering, right?  By the end of the week they felt I was making progress and sent me home with a series of exercises that I would do three times a day. They suggested swimming and yoga or tai chi as well as deep breathing and meditation. Anxiety is a huge part of dystonia flaring up, so it is very important to stay calm and cool. It is almost impossible at times, but I keep on trying.

I was due to return to work the second week of February 2015 or else I would lose my family’s health benefits as well as the income we were now losing since I took medical leave. I was also due to start repayment on my student loans that exceed 50K. Avoid stress? Stay calm? Yeah, right!

I was still able to drive if I did sensory tricks by holding my left hand to my left cheekbone and pushing on it, but really I was starting to feel like a hazard to myself and others. My head tremors were the worst in the car. I started swimming 3 times a week by holding a kickboard and doing laps to strengthen my core. Getting out of gravity in the water felt good, but as soon as I was back on land I felt terrible. I forged on and went back to work in February where everyone was so amazingly supportive and helpful. I tried to fight through the pain everyday and did OK for about 3 weeks and then I felt like I was getting progressively worse. I tried another round of BOTOX in March and was hoping that would help ease the pain but it actually made it worse and my body was failing me. One day at work I realized I was walking down the stairs with my face pressed against the wall and walking sideways. I was so dizzy and had a hard time focusing. At home I was trying to hide the fact that my right hand was trembling. My neck was so twisted that it was pinching nerves so that my left arm felt tingly and numb and at it’s worst I could not touch my left fingers to my thumbs. I used to play guitar so that was tough to fathom. My chin was stuck to my left shoulder and therefore my body’s muscular system was all out of whack and not working properly. I made it six weeks at work then asked to take another medical leave and made an appointment to return to Georgia. I also filed for disability. I figured I should hope for the best and prepare for the worst. When I told them how quickly I was regressing they wanted to see me as soon as I could get there. I just did not want to admit or accept how truly sick I was.