October 2022 Cerebellum update:
I've completed one year of immunotherapy treatments and believe that they are holding back the antibodies, but it's become apparent that I need to seek other help to regain my vision and normal walking. With that being said, I am seeking help through acupuncture.
It's been a long couple of years with major changes to the way that I live my daily life.
(Scroll down to read the whole story of my autoimmune disorder below)
THANK YOU for listening to my music. It helps more than you'll ever know....
If anyone would like to help pay for medical bills that aren't covered by insurance, you can donate through PAYPAL THANK YOU so much!
MY BRAIN - THE WHOLE STORY SO FAR >>>>>>>>>>
In the summer of 2019, I began experiencing peripheral double vision, and feelings of imbalance. I had great vision, but my eyes weren't working together. After many tests, (MRI, angiogram, x-rays, CT scans, multiple eye exams and blood work) I finally got an answer.
In October 2020, I was diagnosed with an extremely rare autoimmune disorder where healthy antibodies go rogue and attack tissue in the cerebellum of the brain. Glutamic Acid Decarboxylase ataxia. This leads to imbalance, double vision and ataxia, muscle problems in my right leg/foot.
Thank God for a wonderful Neuro ophthalmologist who diagnosed the problem through a blood test. She had never heard of it. Next, I consulted with a Neuro immunologist from Mayo Clinic in Rochester, MN. Working together, these two doctors set up immunotherapy treatments for me here in WA. Beyond that, I've been on my own because there is so little known on this diagnosis.
August 2021, I started the IVig treatments where I receive an infusion of healthy antibodies from other people. Amazing! I have hope that this will stop the attack on my cerebellum.
Besides the medical treatments, I created a strict exercise schedule of walking 1 mile every day. (retraining my right leg to walk properly) Reading classical music, balance exercises and DANCING to smooth jazz music are the other daily exercises in my routine. It's crazy, but I can dance easier than I can walk! I also hope to start vision therapy. This is a lot of work for someone who feels imbalance and has peripheral double vision, But I know the exercise is making me stronger and healing damage incurred in my brain. Now I just have to wait and pray that the IVig treatments are stopping the antibodies from attacking my cerebellum.
This has been a journey and continues to be a major challenge.
During this crazy time, composing music (especially electronic) has been a great refuge and therapy for me!
Thank you to everyone who listens to my music on streaming radio. These royalties truly help pay the bills and give me the chance to keep recording new projects. Thank you for your kind words and prayers!