The Journey of Daniel Ferrari

This is the personal account of Daniel Ferrari and his family surrounding the events leading up to his paralysis and the resulting impact on their lives. This is purely meant to raise awareness and encourage others to join the battle in pursuing medical advancements for the disabled populations across the globe. There is not a more noble pursuit than to lift up those in society who desperately need a helping hand and the feeling of value and self-worth.

When I received a flu vaccine on September 30, 2016, little did I realize that my life was about to change forever. Shortly thereafter, I began experiencing changes that included loss of appetite, feeling lethargic, loss of interest for normal activities I enjoyed and even falling asleep at work, which was highly unusual and noticed by my supervisor. On October 29, I started getting chest pains while at work that went down my left arm and shortly after went down my right arm. These pains continued intermittently, so I went home and had my wife drive me to the emergency room. The tests they did at the hospital showed no signs of a heart attack or stroke, so I was admitted for observation and further testing. At this time, I was walking, using the bathroom, and able to use my hands to feed myself. During the night, I experienced the worst pain I have ever had. The pain started between my shoulder blades, and it felt like my body was on fire in that area. It then proceeded down my left arm to my fingertips and then down my right arm. I called for the nurse, and she came in and immediately put a pain patch on my back. After the pain became less intense, that is when I noticed the paralysis, and I was unable to move my feet and legs; I was unable to sit up or roll over, and the function of my hands was gone. A sense of fear came over me like I have never experienced before. Thoughts were going through my mind about what I was going to do and what else was going to happen.
 

I was transferred to the ICU right away as they were concerned the level of paralysis was high enough to prevent normal breathing. The thought of dying and never seeing my wife and family again paralyzed me with more fear than I have ever experienced in my life. My family was notified and came up right away and were distraught by what had transpired. Over the next few days, the thought of never walking again or being functional terrified me; I have no words to describe that level of fear and helplessness. I also came to the realization that my bladder and bowel functions were affected, and since that day, I have never been able to use the bathroom on my own accord. I have to be cathed intermittently throughout the day and have a bowel program involving manual stimulation, among other things. The embarrassment and humiliation of these things still bother me today. After numerous tests, I was diagnosed with transverse myelitis, and that the cause was viral. They did inquire as to if I had taken a flu vaccine, and per my notes above, I had taken it within a month of my diagnosis.

After three weeks in the hospital, I was transferred to Marionjoy Rehab Hospital for 6 weeks, then to a subacute facility for another 6 weeks. I was not able to go home until February 2017. During this time, I was in occupational and physical therapy every day but never got any lost function back. I was told my only hope of improvement was to continue with therapy, which I have been doing now for over four years. I was now a quadriplegic and had serious doubts of ever returning to a normal life. My son, daughter, wife, and grandchildren visited me often on the various facilities and provided me hope to continue fighting. My children and faith in GOD were the only things that kept me fighting.

I was still working at the time this occurred and had no intention of retiring as I had a rewarding job working as a juvenile detention specialist. Outside of work, I enjoyed weight lifting, shooting, martial arts, and helping my son Adam run the family business (Ferrari Energy). I had been lifting weights since my father got me my first set of weights when I was 12, and this was a very important part of my life. I also enjoyed hunting with my uncle while I was growing up and teaching my son Adam how to properly care for and use firearms. I enjoyed going on vacations with my wife, going to movies, eating out at restaurants, and spending time with and actively playing with my grandchildren. My grandson was just at an age where I was starting to play catch with him, teaching him to bat and shoot baskets. We had a membership at a recreational club, and I enjoyed picnics, swimming, water skiing, and other outdoor activities. I also took great pride in taking care of my lawn and the upkeep of my house, as well as my mother’s lawn and house while she was still living. The things I had taken for granted before my injury I now cherish and would give anything to be able to do them again. I could fill the pages of a book with all the things I can no longer enjoy.

A typical day for me now starts out with early morning meds and a suppository for my bowel function. Sometimes the external catheter I must wear at night comes off, and I would be laying in urine for a long time if my wife didn’t check me and get me changed and dry. Sometimes this involves her having to get up in the middle of the night. It is a horrible feeling being unable to shift positions or turn over in bed. Then the caregiver arrives and helps my wife take off my prafo boots that I must wear every night to prevent pressure ulcers on my heels and foot drop and remove the wedge support that keeps my body from developing pressure ulcers. This is a constant worry and fear for both myself and my wife. I also must sleep in a hospital bed with a special alternating pressure air mattress to help keep me from getting pressure ulcers. Then the caregiver feeds me in bed, and my wife does my cath. They then get the sling under me and get me up on a special shower/commode chair using a hoyer lift. My wife then has to give me digital stimulation to help me have a bowel movement while the caregiver massages the abdominal muscles. The caregiver then gives me either a bedside bath or gets me in the shower. They transfer me back into bed and get me dressed. I must now wear adult diapers all the time, as there is incontinence with both the bladder and bowels. Then I get transferred to my power wheelchair, have my hair washed, and my wife has to help me comb it. The caregiver also gives me a shave and a yogurt snack as it is now mid-morning. My wife takes care of my teeth and dental implants/dentures. I cannot do these things any longer, and I feel humiliated and embarrassed by what the caregivers have to do for me. My son Adam spends a lot of time at home with my wife and me, and when he is home, he assists with our routine as well. I am grateful that he is still able to travel and help. His presence in our home brings me great joy. Given the challenges noted above, we can never really schedule anything first thing in the morning, as all of my morning care takes around 3 hours.

I suffer from autotomic dysflexia, and when my bladder gets too full, I start getting severe headaches and experience a drop in blood pressure when I am cathed, which causes me to feel very lightheaded and my arms feel limp. I am on meds for low blood pressure, which causes many problems. I am also on meds for spastic bladder and have been hospitalized numerous times with UTI’s that are a constant problem now. I went septic one time in the hospital from a UTI, and they had to call a code and get me into the intensive care unit ASAP.

We don’t have any evening activities because we have a caregiver coming at 8 PM every night to help with my night routine. My wife has to do passive range of motion exercises every evening to keep my joints moving and prevent them from getting stiff. This includes my hands, feet, and legs. Things are difficult for my wife as she has her own health issues. I feel like a burden to my family. Mentally I have my faculties, so this just heightens my frustration, stress, and awareness that my body does not function and I am a quadriplegic. My emotions have ranged from anger, fear, and depression over the course of the last 4 years.

Despite going to therapies and trying different treatments recommended by my rehab doctor, no real recovery has occurred. The therapies have benefited me with gaining a little core strength to be able to assist my wife and caregivers. Without continued therapy, my core strength would be a little diminished. The team at Next Steps has helped immensely with this, and they have become part of my extended family. My only real hope of ever having any meaningful recovery is continued therapy and new medical breakthroughs such as stem cell therapies, etc. My days now revolve around my care, doctor and therapy appointments, and visiting my daughter, son-in-law, and grandkids, as we had a ramp put in at their home so I could get in. We used to be able to go to a movie but have not been able to enjoy this since early 2020 due to COVID. My condition puts me at high risk for serious complications, but I still want to get out and do the things I love. I feel helpless watching my wife deal with taking care of our home and all that is involved with getting help with the lawn, snow removal, general maintenance, and repairs. I previously handled much of these things, and I am no longer able to do so, nor can I participate in the activities I used to enjoy. Our life at times is now very isolated and lonely.

In closing, I would give anything to have my health restored and to be able to enjoy the life I had before my injury. I would love to be able to get in a car and just take a ride, but I am not able to drive. My wife must now load me into our wheelchair accessible van to go anywhere. I would also love to take a walk with my wife and play with my grandchildren. I would love to travel to California to visit our son Adam. A great fear I now have is if my wife passes away before I do, I would end up in a nursing home. She has provided for all of my caregiving needs and has gotten me the assistance I need. Without my wife and family by my side, I would have nothing to live for.

Even though my circumstances are challenging and I long for the restoration of my bodily functions, I pray continuously that some good may come from my tragedy. I ask GOD every day to somehow use my experience for good in what seems like a very dark world at times. My son and I have launched the Ferrari Foundation and the Adam Ferrari Scholarship in hopes we may accomplish this fundamental goal.