As many of you probably know already I experienced a pulmonary embolism late in April of this year. That’s a fancy way of saying that a blood clot, 27 of which were in my left leg, found its way up into my right lung resulting in a short period of death. I was revived by a team of doctors and was put in a hypothermic coma for 10 days. Luckily, I had really good medical care at the local hospital in Prescott, Arizona. I am incredibly fortunate to still have excellent brain function due to the quick actions of my family and all of the emergency responders that night and in the ensuing weeks.
As a result of my time without oxygen, I have been diagnosed with a rare disorder called post-anoxic or post-hypoxic myoclonus. After being in the hospital in Prescott for over 6 weeks, I was transferred to a nuero-rehabilitation facility, Barrow’s, in Phoenix. After 40 days at Barrow’s I was discharged, still in a wheel chair, with limited progress towards solving the myoclonus. I returned to Prescott to continue my healing, which is going slowly.
The main issue is that my brain is not sending the messages to my body to move correctly. Simply, the myoclonus is a severe movement disorder. I can no longer walk and I cannot stand without substantial help. Most activities of daily life such as food prep, toileting, and even holding a glass range from difficult to impossible for me at the moment.
I am receiving occupational and physical therapy in home several times a week. I am starting to make slow progress feeding myself with a fork and a spoon. I am fortunate to have a very open minded and excellent neurologist who is willing to try many different avenues to healing. He thinks that my pulmonary embolism may have strengthened the effect of any pre-existing conditions or infections in my body. I am continuing to treat Lyme and I am obviously faced with an entirely new set of physical challenges. There is no doubt that this journey will be a very long one and I am focused on my full recovery.
I am fortunate to be covered under my father’s insurance, at least until next July. However, the insurance does not cover all the expenses and treatments. The ones that are most promising, require additional funds. I am happy to write that I’m preparing to travel on September 5th to meet with one of the top doctors and researchers for myoclonus in New York City! I’m blessed to have this opportunity and will continue to provide updates as I know them. As you all may imagine the cost of my care, transportation and medicine are huge and will be ongoing for the foreseeable future.
It hardly feels fair to continue to ask my community for help. Unfortunately, any financial support or ideas of how to afford treatments not covered by insurance, in home care or long-term rehabilitation, would be greatly appreciated. As you can see my financial goal has greatly increased to reflect recent events. I am taking things one small step at a time, one day at a time, and any small donation helps.
Blessings and love to all of you. As my hands continue to regain their function I will keep all who wish to know better posted on my progress.