Dan Tucholski’s Health Messenger Highlight

My name is Dan Tucholski and I am 38 yrs old. I have an older brother who lives in Colorado Springs with his wife. They are both in the Air Force. My younger sister is a flight attendant with American Airlines and she lives in Annapolis. I live in Annapolis now but I have lived in Monterey, CA., York, ME, Montville CT., and I was born in Charleston, SC. I moved a lot because my Dad was in the Navy.

In the past I have participated in swimming, basketball, softball, floor hockey, cross country skiing, tenpin and duckpin bowling, horseback riding. I played soccer and went to the National games in Iowa with my team. I currently participate in snow shoeing, power lifting and track and field for Anne Arundel County. I don’t play the other sports anymore because I have gone blind.

I wanted to become a Health Messenger to learn how to keep myself healthy and to help others learn how to stay healthy.

– Dan Tucholski

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Strong Minds

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My Health Journey

I was born in Charleston, SC the same day that my dad left on deployment on a submarine. I was 8lbs 12 oz and was very long and skinny; just like I am now. I left the hospital when I was 1 day old. My mom knew right away that there was something “not quite right” but the doctors told her that she was just anxious because my dad wasn’t there. She said when she held be under the arms that I hung like a raggedy Andy doll. She couldn’t get the doctors to make any appointments to check things out. When I was 7 months old my mom drove us to Montana (dad was out to sea again) and we stopped in Indianapolis to see my aunt and Uncle, who are both doctors. Uncle Mike had a friend who was a neurologist who checked me out and gave me my first diagnosis of Cerebral Palsy, etiology unknown. Once I had that diagnosis my mom was able to make appointments in Charleston. They did other tests and stayed with the CP diagnosis. There was no early childhood education in South Carolina so I didn’t get outside services.  It’s a good thing my mom was a special educator, so she knew how to help me. We moved to Maryland when I was 18 months and then I got OT, PT, Speech and special education services.

We were in Annapolis from 1986-1989 and during that time I had lots of ear infections (got tubes) and pneumonia. Whenever I got pneumonia I would lose the ability to talk and walk and had to start all over learning again. 

We moved to Connecticut in 1989 and I continued with all my services. We were there for almost 6 years. While there I got other diagnoses but the treatment was the same since they were treating the ataxia, speech delays, poor balance. When I was 6 Newington Children’s diagnosed me with retinitis pigmentosa which is that my retinas were fraying and I was going blind. They also did genetic testing to see if I had Fragile X, I don’t. I then started receiving services for the blind; braille, using a cane. All along my mom kept telling the doctors that she thought I had a medical syndrome as my muscles were strong and RP isn’t typical with CP.  I also got a diagnosis of PDD (autism) then so that my insurance would pay for speech therapy. It didn’t pay for speech therapy for people with CP because there is no cure. I got strep throat one time, and it went into my kidneys and I ended up in kidney failure. Post Strep glomerulonephritis.

We moved to Maine in 1995. I had a great school experience (100% inclusive) and great services. It is my favorite place that we have lived. I found out that I am very allergic to nuts there. That’s when my leg started “going out on me”. I had a gait analysis done at Boston Children’s and more genetic testing (Marfan’s, don’t have it). No solution why my leg goes out when I have been exercising a lot.

We moved to California and my mom said it was like going back to the 1970’s in special education services, pretty bad. I didn’t really have any medical issues there, thank goodness.

We moved back to Annapolis in 2002. My eyes had gotten a lot worse; I had another episode of Post Strep glomerulonephritis. My mom tried to explain that I had this before, but the doctors didn’t listen. I was in kidney failure again and my blood pressure got dangerously high. I’m now on HBP medicine because of it. I have no memory of the summer of 2005. I came home from summer school and didn’t recognize where I lived and I couldn’t talk. Mom took me to the doctor and he sent us to the ER. The doctor there didn’t do any blood work but told my mom that I had been sexually abused and to go see a psychiatrist. The only psychiatrist that would take our military insurance asked me three questions (I couldn’t talk) and prescribed three strong medications. Thank goodness my Aunt Pat is a psychiatrist because she told my mom to throw those meds a way and never to give them to me.  She recommended I go to Johns Hopkins. I saw a psychiatrist two times a week for 5 weeks and then one day I woke up and was back to being me. The psychiatrist thought I had been in a catatonic state and wanted to try a medication, but I had to be admitted to the Psych ward at Johns Hopkins. It was CRAZY, my mom and dad were crying and checked me out. Mom found a new neurologist who did a spinal tap and found that I had had encephalitis.  That’s why I was not myself. I had more testing at Kennedy Krieger with my new neurologist. At the same time, I was seeing an ophthalmologist at Walter Reed who enrolled me in some studies at NIH. Lots of genetic testing but nothing that really fit.

In 2018 I started more testing with the CP clinic at KKI as well as doing new genetic testing at Walter Reed. KKI did nerve and muscle conduction tests and found that my muscles are very strong and that I have bad neuropathy in my fingers/hands and feet. That’s why I was falling so much. I also found out that I have osteoporosis when I kept breaking ribs when I would fall. The genetics test came back that I have NARP. It is a Mitochondrial disease where 80% of my mitochondria is mutated. NARP stands for Neuropathy, Ataxia Retinitis Pigmentosa. My parents were very happy to have a firm diagnosis, mom said that final all the puzzle pieces have come together. 

My mom always made sure we ate very healthy and got lots of exercise but what I found out is that if I do get sick, my body goes into a catatonic state (like the summer I had encephalitis). I also need to eat very healthy foods and should have no added sugars. I found out when I moved into a group home how bad my body reacts to fast food and processed food. My body shut down and I couldn’t walk and could barely stay awake.

I really know the importance of eating healthy and exercising.

– Dan Tucholski