Disability Grants To Help FSHD Disabled Jason Meet Multiple Urgent Needs
by Jason Nefores
(Hanover, Pennsylvania, USA)
My name is Jason David Nefores. I am a 30-year-old male with no children. I am an army brat. I served in the Army between 2003-2004. I am a certified CrossFit instructor. I worked in the logistics industry for seven years.
FSHD Disabled But Staying Strong and Positive
I am also the president and founder of a company registered as S*O*A*P Professional Pressure Washing Services.
I also plan to design a clothing line based on the meaning of the acronym S*O*A*P. It stands for Stay * Optimistic * Always * Positive. This has been my personal mantra and creed to combat the overwhelming traits associated with my illness and disabilities.
I have several disabilities that greatly impair my life on a daily basis. I have been overcoming and treating Attention Deficit Disorder and Severe Depression for over 25 years.
It is very hard to concentrate and complete even menial tasks without the assistance of medication. The depression can be so debilitating that I have severe anxiety and panic attacks that can last for hours and result in many tears.
There have been periods of time in my life where I have lain in bed for multiple weeks straight battling the onset of the fear, pain, anxiety, lack of focus, social anxiety and other debilitating feelings and/or emotional stresses.
I have also recently been diagnosed with adult onset of FSHD Facio Scapular Humeral Dystrophy. I began to notice the signs of this genetic mutation 32 months ago beginning in March of 2013.
Losing Muscle Tone on Right Side of Body
In the beginning of this life-changing experience, the first muscles I lost were on the right side of my body, including the serratus anterior and the latissimus dorsi.
This prevented me from putting my arm straight above my head and caused my scapula to wing out of the rear of my body.
The original diagnosis in May of 2013 was palsy of the serratus anterior caused by trauma to the long thoracic nerve. To better illustrate what was happening in my body you must consider the pathology of what was happening inside of me. My muscles atrophied. I couldn't use my arm anymore, and this is really where my story begins.
After many months of physical therapy, quitting my desk job due to harassment, and only an 18-24 month spontaneous recovery period to rely on from the doctors, I tried to get the condition under control by combating it with physical exercise.
Despite my efforts to fight this unbelievable disabling deformation, I have been unsuccessful at regaining the control of my right arm or any of the muscle lost.
I have literally lost the ability to use my right arm without either lying down or wearing a very large don joy shoulder brace that provides relief from my free floating scapula on the right side.
After leaving my job due to harassment, pain and fatigue, I founded my company based on the principles I live my life: integrity, duty and honor.
Unfortunately I continued to lose the capacity to use my right side to the point that I have to walk with a cane, wear a neck collar and a don joy shoulder stabilizing brace just to get around.
I am waiting on a confirmation from Penn State Hershey Medical Center, as they recently drew blood to do DNA testing to confirm the neurologist diagnosis.
After 32 months I have lost the use of and feeling in the better part of the upper right side of my body. I have shown loss in the right leg as well, which is causing foot drop.
I have also lost muscles in the chest, lower neck and arm, as well as the loss of feeling in many areas as well. This condition is so debilitating that I am in bed for most of the day everyday.Financial Hardship
I lost everything I had worked so hard for. I lost all of my personal belongings: my vehicles, my clothes, housing, healthcare and my dignity.
I have $22,000 in debt that I can't even begin to start repaying. I don't have money for housing. My own brother evicted me because neither he nor my family understood what was happening to my body.
I was accused of being on drugs. I was harassed by the police for scrapping metal out of dumpsters in the dead of this last Pennsylvania winter. I was charged with scavenging and trespassing just because I was trying to keep myself alive by digging in a dumpster.
I was homeless and living in a tent with my dog for a while as well. Fortunately for Buddy and me, some kind folks took us in when I found a Wi-Fi hot spot and desperately put out a call for help on Facebook.
I have no means to pay them rent and I have lived here in their child's nursery room for over four months now. I still have my homeless box, a green Rubbermaid container that I dragged behind me to carry my few belongings, food for Buddy and me, trash bags to stay warm with and water.Income Efforts
I have tried to sell things on Craig's list and eBay. I have scrapped metal out of dumpsters and trash cans. I have a GoFundMe page where people have graciously contributed over $500 to help me keep going. I receive $198 a month in the form of food stamps.
The doctors' appointments continue to come with no relief of the discomfort, lack of use and deformation of my body. I have applied for Social Security Disability and I am still waiting to find out if I will be approved or denied.
I was recently informed that I needed to apply for SSI separately so I now have an appointment in late September to finally apply for that as well. I was misled to believe I had applied for both already all the way back in October of 2014 by the person who was my Social Security case manager. I am still so upset about that.Specific Needs
I seek help with gaining benefits, grants, SSI, SSD, a lawyer, advice, liquidity, financial assistance and housing assistance.Business Idea
I have already founded my own multipurpose company cleanly named S*O*A*P Professional Pressure Washing Services.
While living in Florida I planned to purchase what is known as the Landa Ecos pressure washing system. With this system I was going to revolutionize the pressure-washing world by utilizing the grey water reclamation system incorporated in the Landa Ecos.
The Landa Ecos literally recycles and reuses its own water, which could drastically reduce the waste of thousands of gallons even millions of gallons of fresh water each year.
I also plan to use the acronym S*O*A*P to start a clothing line that would donate a portion of its proceeds to fund research and development for a cure for FSHD.
S*O*A*P stands for Stay * Optimistic * Always * Positive. This has been my personal mantra and creed in my battle to overcome and resist the effects of my disabilities. It's a clean way to remember the perspective we each embody as individuals and as a whole society.
Thank you for reading my story. I look forward to working with you.
Jason David Nefores (CF-L1)