Mike De Rosa is a well-known warrior in the Ataxia community. He is such an inspiration with all the tough workouts he does. I haven’t seen any video of him doing burpees though (inside joke). Enjoy!
Mike De Rosa here. I first started having multiple and progressive symptoms in Sep/Oct 2011. After almost two months of trying to understand what was happening to me, i.e., labored and slurred speech, gait issues, lack of fine motor skills, daily headaches, depression, and a loss of 30 pounds, I did what most people do these days to self-diagnose…I went to the internet. That encouraged me to see a neurologist. The next 12 months or so was an emotional disaster after seeing two neurologists at different medical institutions. Within the first few months, I was diagnosed with ALS, then after more testing, I was told it was not ALS but Primary Progressive Multiple Sclerosis. After the next nine months or so at the University of Chapel Hill (North Carolina) I fired my doctor and went to the Mayo Clinic in Rochester, MN.
It was the Mayo Clinic, who, after two separate weeks of testing, diagnosed me with a hereditary Ataxia (2012). It took two years of back-and-forth with the military Tricare and the Veteran’s Administration (VA) to get approval for the genetic testing, which the full panel came back negative on any specific type. For the next seven years, we all thought my ataxia was genetic and continued to search for an origin.
In Sep/Oct 2019 I took part in a study with the Undiagnosed Disease Network (UDN) Clinic at Duke University Hospital, and after another week of testing, I was informed that my ataxia was not genetic but acquired from an attack on my autoimmune system.
I graduated High School on 11 June 1982 and 13 days later I was getting screamed at by a Drill Sergeant at an Army Basic Training reception station. For the next nine years, I served in a combat arms specialty and for the next 14 years, I served in the Army Special Forces (Green Berets). During these 23 years, I traveled the world and experienced many cultures. I also trained and qualified in many dangerous skills, i.e., jumping from aircraft at altitude, rappelling from helicopters, amphibious operations, and demolitions to name a few, as well as conducting numerous life-threatening situations (combat operations) overseas as an active-duty soldier and US Contractor, and would do them all again.
That is all a far cry of the life and times of me today, though I have been able to finally find a happy place post-ataxia diagnosis. I stay very active with my garage gym, walks and hikes at least once a week, working through COVID and hosting Zoom meeting with the amazing folks of the Tarheel Ataxia Support Group, and fundraising while raising ataxia awareness.
About four years ago I saw advertisements for Spartan events and a fire inside was lit. I still had good overall strength but had some apprehensiveness. I have always been one to go for it, so I signed up, and it wasn’t for the short race, it was for the middle-distance race. I couldn’t do all the obstacles, but I did about three-quarters of them. The ones I could not due were paid with a penalty of doing burpees…a favorite of our great host and founder for Hope for Ataxia, and one exercise I do not like. That event helped build my confidence again and I was hooked. I also started walking with a weighted rucksack again and it helped significantly with my gait. I found a local ruck club, the Sandhills Ruck Club, joined them in several ruck/workout meetings, and…I was hooked again.
My disability has taught me something that helps me. I call it P3 = Patience, persistence, and perseverance. Also, try to be determined, and teach people about Ataxia!!!
I started raising ataxia awareness in 2018 when I started walking again and decided to go for the gusto and hike 26.2 miles in the high desert of White Sands, New Mexico during the annual Bataan Memorial Death March. I did two fundraisers and donations came close to $8000. In 2019 an Ataxian brother, Ed Brand, joined me and together we raised over $35,000. Last year in 2020 the event was canceled due to COVID. However, our movement, the Joint Mission Bataan, had grown and 28 were prepared to walk the 26.2 miles. We put out a message asking for everyone to still conduct their walk in their towns. We did just that and raised $215,000.
The Bataan March for 2021 has gone virtual, but that is not stopping us. We are putting on an event, raising donations for the National Ataxia Foundation, and spreading Ataxia awareness. This year we have “Country Skies Xtreme Hike” that will be held on Saturday, 24 April 2021, in Hendersonville, TN, which is about 10 miles from Nashville.
Never give up, never give in. Be and stay positive even during difficult times. If you are not a believer in a higher being, then become a believer. It has worked for me and changed my life for the better.
There is old wartime saying, “there are no atheists in foxholes”. One thing I can say for certain when faced with adversity, people change! I did. It brings you to a fork in the road and you have to make a decision!
Thanks for sharing your story Mike De Rosa!