August 2023 Cerebellum update:
On May 1st, I began receiving tDCS (transcranial Direct Current Stimulation) from a medical University in New York. These are daily remote treatments. After 3 months, I have noticed some improvement to my walking, but still need more therapy for my right foot/leg.
I talked my way into a research team where they have never worked with my disorder, but are willing to try. My biggest desire is to walk normally again and not feel off balance. It would be wonderful not to have double vision!
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 and research treatments that are not 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: GAD ataxia (glutamic acid decarboxylase ataxia) Healthy antibodies go rogue and attack tissue in the cerebellum of the brain. This leads to imbalance, double vision and ataxia, and in my case, 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. I added acupuncture and Chinese herbs and believe it has helped keep the disease from progressing more than it has.
Besides the medical treatments, I created a strict exercise schedule of walking 1 mile every day. (attempting to retrain 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. This is a lot of work for someone who feels imbalance and has peripheral double vision.
In 2022, I added acupuncture and Chinese herbs to my attack plan. I believe that all of these treatments have helped slow the aggressive disease. However, I want to stop the ataxia! I want to regain what I've lost, so now in 2023, I'm trying electrical stimulation (tDCS) treatments, specifically targeting the cerebellum.
This has been a long journey and continues to be a major challenge.
During this crazy time, composing music 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!