I'm at the "peak" of my Botox injections and I can truly say that they have been so helpful in reducing my pain and symptoms. I am so grateful for Dr. Kukurin pushing me to try the Botox again.
By having the Botox injections I am able to do my functional neurology exercises easier and more precisely. This will help create new neural pathways (plasticity) in my brain and make lasting changes to help my body function and move properly.
On a scale of one to ten I have been averaging a 7-8. I've had one day where I felt worthy of giving it a 6. I have been sleeping better and do not feel as "wired" all the time. Walking has been less painful and not as scary. My mood and temperament has been better. When you are in excruciating pain it is hard to be fun-loving and playful. I am so thankful to be able to have more patience and quality time with my son. To be able to watch a movie or read a book with him and not having my head shake is like a dream. Brushing my teeth and eating are a little better, but my head still feels like a floating bowling ball and out-of-control at times. I still spill food on myself and spitting toothpaste into the sink is like an Olympic event.
Sometimes I get down on myself for not being who I used to be. The hard-working, adventurous soul. But then I realize I am still that person. The job has changed and I've never worked so hard in my life. Dealing and trying to manage dystonia is a full-time job. The adventure is not what I planned but it is still a journey. I have traveled to brain centers, discovered new ways of healing and learned how incredibly strong I am-even on days when I feel broken and weak.
Of course, there is now the anxiety of when does the Botox wear off and how long do I get this slight reprieve from the pain? One day at a time....