I had my first mini-stroke on May 2, 2014, at the age of 47. On May 29, 2015, I had a major stroke that affected my speech severely and caused me to lose some functionality in my right hand. I’ve since learned to compensate by teaching myself how to do some things with my left hand. On April 10, 2016, I suffered a third stroke, leaving me with minor deficiencies (i.e., leg weakness, muscle pain, additional tongue and mouth weakness). Then, on May 21, 2016, I suffered a fourth stroke. Praise be to God, I am still here to tell my story!
There is no known cure for CADASIL or medications specific for CADASIL patients. In my search for alternative solutions, I discovered Hyperbaric Oxygen Therapy (HBOT ). When the cells in the brain die from trauma or lack of oxygen, blood plasma leaks out into surrounding brain tissue causing swelling and reducing blood flow. These otherwise normal cells go dormant because they can't function without the appropriate amount of oxygen. This leads to lots of pain throughout my body. Every day. All day. HBOT dramatically increases the oxygen carried in the blood plasma making oxygen available to heal damaged walls and prevent the leakage, thus, reducing the swelling. As the swelling decreases, blood flow can be restored to the dormant tissue and these cells then have the potential to function again. As part of the CADASIL community, I've spoken with other patients who utilize HBOT. Each one agrees that their quality of life improved immensely.
The Oxygen Therapy is expensive. Each session can range from $75 to $200. Initially, I will need 40 sessions. These sessions are given once a day, Monday through Friday. I will have to relocate for the 2 months of therapy because there is no center in my hometown that provides this service. HBOT is "off-label" for CADASIL patients; therefore, my insurance will not cover it. My consultation is on July 14, 2016. Hopefully, I will be approved to begin therapy on or before August 1, 2016. I stand to gain clarity of thought, improved mobility & speech, and respite from the constant pain that has become a part of my life. Quite frankly, I can’t do this alone. With your financial support, I will be on my way to a better quality of life.
Thank you in advance for your contribution.
- William K. McCallum
- Warren Purcell
- Clinton Pighet
- Patricia Whitted
- David Mack
Organizer and beneficiary
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