Frequently Asked Questions
How long have you had this?
Looking back, symptoms of twitching, cramps and toe drag were present several years ago, I just didn't know what these, together, all meant..
What made you go to the doctor?
During my Stanford Graduate School of Business 25-year reunion in June of 2012, we went on a hike, followed by a bike ride the following day. Riding up to a ridge, it became harder and harder for me to pedal. Near the top, I could go no further, tried to get off the bike and fell over. I had no strength in my leg. A doctor friend immediately referred me to a neurologist.
When were you diagnosed?
The initial dignosis was at Emory, in Atlanta, in summer of 2012. After that, we went to The Mayo Clinic in Rochester, MN, in August of 2012, for a second opinion. They determined there was somethin amiss, but it did not, at the time, rise to the level of an ALS diagnosis. We returned in August of 2013 and got the diagnosis: amyotrophic lateral sclerosis - ALS.
What happened at The Mayo Clinic?
I was put through a large number of tests over the course of three days. At the end, I was given the results and diagnosis. The quality of care an professionalism of the staff in Rochester is absolutely amazing.
Do you have any pain?
I have no pain direclty due to the disease. I do have some back discomfort due to my abs being weakened.
What treatment are you getting?
There is no real treatment for ALS. I am taking chinese herbs prescribed by my acupuncturist, getting acupuncture, doing yoga, give myslef shots of B vitamins and of Glutathione, and practice Transcendental Meditation.
How can I help?
If you have any ideas on how to raise funds by having companies "do well by doing good" and partnering with us, please let me know. Also, please help me spread the word about the disease by sharing this site and my the facebook page https://www.facebook.com/beyondals.