Debra's Story

In 2011 I began to experience pain on a daily basis in my knee, neck and my lower back, which gradually got worse each day. I noticed that when I walk my hip joints would ache to the point that I started to drag one hip and leg sometimes as I walked. Walking a long distance or through the mall was impossible. I thought this was a result of an injury from a fall I had in March of 2010 at a work related training. So since this pain never went away completely, I went to my second set of workers comp physical therapy in 2011. Although I did feel some immediate relief from the physical therapy when they would put me in the Machine that stretched my neck and spine, but the pain continued to worsen daily. The workers comp physical therapist suggested I see a hand specialist regarding the weakness I was experiencing in my left hand.

Around April or May of 2011, the hand specialist referred me to a neurologist in Orlando Florida because of muscle tissue thinning in my left hand. The neurologist asked if I was experiencing any cramping. I let him know that 4 months prior, I was having incredible muscle cramping in my legs. While lying in the bed I could just move my foot and have excruciating cramps go all the way up my leg. I would often find myself getting out of the bed in the middle of the night to walk around to try to relieve the cramp. I would experience the cramps almost on a daily basis for about 4-5 months. I started to notice my muscles twitch mainly in my left arm in the beginning and then gradually it started to happen in my right arm. later that twitching became noticeable in my legs, and my upper thighs. After months of undergoing testing at the hands of the neurologist, he referred me to a surgeon to have a muscle biopsy done. The neurologist felt do to the unusual brake down of muscle tissue in my left hand and over all muscle twitching, the biopsy would be more proof towards determining if I have a neurodegenerative muscle disease. Even though the hand specialist determined that I possibly had carpal tunnel and he located several cysts in my left wrist, he knew there was something more going on with the muscles in my hand.

The neurologist referred me to the Mayo Clinic in Jacksonville, Florida for a second opinion. I went through some of the same testing as with the neurologist, but more in depth testing was done. They said what causes this disease is unknown. It is believed it could have something to do with head injury, maybe with stress. I let them know that I was in a very stressful job doing case management for foster children for many years. It was a job very hard to separate from, often times brought home. It was an amazing job where you gained so much gratification from helping others, yet it was so draining and you felt like you were killing yourself on a daily basis to try to fit everything in and meet tremendous deadlines. On top of that I was dealing with all the other daily stress which I had been experiencing for many years. I had and still have a way of internalizing stress more than others.

I was questioned about any possible head injuries. The two times that I recall that I felt like I had a head injury where my brain actually shook. The first time was around 2000, I was hit from behind by SUV, while sitting at a red stop light. I felt my brain shake or at least had that sensation. The second time was in 2010 when I was coming down the stairs at a work related training. I missed six steps and ended still standing on the landing below the stairs, thinking I had broken the heels of the shoes I was wearing. Instead my heels gave in as I landed. This impact shook my whole body and twisted my right knee outward. I landed with such force I could feel my brain shake in my head. Prior to that fall I felt very healthy and physically fit. I had no back pain or neck pain prior to this fall.

On September 10, 2012, the Mayo Clinic diagnose me with ALS, also known as Lou Gehrig's disease..
One of the worst days of my life was the day the local neurologist called me into his office to give me the final diagnosis from the Mayo clinic. Picture this, me in the neurologist’s office all alone with him and two other people on his team. The neurologist just told me that I have a neurodegenerative muscle disease Lou Gehrig's. He told me my life expectancy was two to three years and I needed to have my family get my affairs in order. He followed that up by telling me this disease eventually leaves you completely paralyzed with only eye movement. It is a disease which has no cure at the present time. My heart dropped, I couldn't say anything at the time, I think my reaction was simply to laugh and I think I was finally able to get the words out, you kidding me, right? That was followed by Tears and I finally gain my composure enough to get out of that room, walk down the long hallway and drive my dedicated self-back to work. Since I received the diagnosis I have met and heard of people living with Lou Gehrig's for many years, although eventually wheel chair bound with other various medical challenges.

I am working diligently to raise awareness regarding ALS/Lou Gehrig's disease. This is my journey and I am not giving up. I am working towards staying strong, surrounding myself with family and close positive friends.