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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
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.

Disability Issues

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
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.

Sincerely,

Jason David Nefores (CF-L1)
President/CEO
S*O*A*P
http://www.gofundme.com/jasonfsh
https://m.facebook.com/firstcoastsoappros

Comments for Disability Grants To Help FSHD Disabled Jason Meet Multiple Urgent Needs

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Oct 21, 2015
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Push yourself to self healing
by: Brian Bostic

Probably the last thing you really want to do is surgery. Did your test results ever come back?

If they were positive, then you'll need to discuss options with your doctor. There are herbal remedies available to deal with your disorder. Pain medication usually results in dependence and a life long addiction.

If the results are negative and it sounds like they might be since the doctors aren't getting back to you, then you are fine and need to start an exercise regimen to cleanse your system. Sitting around will just lead to muscle atrophy which is probably what you are experiencing. Get out and take a walk, do some sit ups, then gradually move on to a more structured set of exercises to build muscle in your weakened areas.

Stay positive and you'll eventually be functioning normally in a few months. It you sit around and do nothing, what are your options?

Oct 14, 2015
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Hydrate and exercise
by: Kurt Patterson

Sounds to me like your muscles have atrophied due to inactivity. I personally experienced many of your same symptoms and made dozens of visits to doctors and other specialists in the neurological field. You have to understand that doctors will NOT operate unless they find a cause or condition.

I finally decided to kick the pain pills, exercise regularly, drink lots of water and think positive, which is something already part of your mantra. It took me approximately two weeks and I began to feel better. My arm muscles got stronger, and I was able to walk without a limp. I thought it was a miracle but it turned out to be a little activity and positive thinking.

My advice is give it a try and you'll be back to work in a few weeks and feeling proud about yourself once again. Give it a try; it can't hurt.

Kurt Patterson

Oct 05, 2015
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What an update!
by: Don from Ability Mission

Wow Jason!

That's the most comprehensive update anyone has ever done here.

Thank you for keeping us in the loop. Be sure to follow the steps in the Workbook. You never know where you might find help.

Best
Don Coggan

Oct 05, 2015
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Catching up
by: Jason D Nefores (CF-L1)

Dear Don,

Thanks for the heads up! I will pick up where I left off now. I went on a bit of a hiatus from the internet while i was waiting for the genetic test results to come in. Sadly they have not...

The past month has been very interesting and difficult as a million different variations run through my mind as to what the results will say. I so anxiously await the call from Hershey Neurology to let me know the results are in but the days roll by like painful molasses still with no response.

I call up to Neurology at Hershey every other day or so to find out if the results have come in yet, but sadly no one has returned a call in the last two weeks.

Due to the severe pain I experience every day I made a visit to my neurosurgeon Dr. Rizk on 10/01/2015 to discuss the surgical options to relieve the pain, and to allow me some use of my right arm without a brace.

We discussed fusion of the scapula to the rib cage at which point Dr. Rizk said he doesn't perform this type of surgery, and he would refer me to the Orthopedic Surgeon at Hershey who is a shoulder special assuring me he would plead my case so that surgery could be done asap: Dr. Kim.

So Dr. Kim wants more x rays of my shoulder, for what reason I'm not sure but I went through the motions to appease them in hopes that Dr. Kim would be willing to do the surgery.

All in the same day Hershey was able to provide me with an appointment. With my neurosurgeon who could provide no assistance, they "fit" me into Dr. Kim's schedule on the same day 10/01 , and also got unneeded x-rays.

What did Dr. Kim say? What did my 4 hours of driving round trip and 5 and a half hours of in hospital time get me you may ask?

Well of course Dr. Kim wants to wait for the results of the genetic testing before he moves forward with any surgical treatment. He is referring me to pain management, and he recommended I go back on pain killers.

Our system is so sadly backwards Don and these health institutions in my opinion seem to be milking my government tax payer paid for health insurance for as much as they can without much concern for my quality of life, my ability to function, or my need to use my right arm and live my life at a sub 9-10 consistent pain level daily.

The blood for the genetic testing was drawn over a month ago. The gal at the front desk of the blood clinic told me it usually takes 2-3 weeks for the results to come back.

I have called Hershey Neurology, specifically the nurse for Dr. Bandi my neurologist, at least once every other day. I haven't had a call back in over two weeks despite leaving multiple messages.

So I wait, with a new Don Joy Brace. It's better than the old brace but no where near as good as my arm was when my scapula was held down by muscle, and I wasn't in severe pain most of the day.

Don't let anyone fool you, patience isn't just a virtue, its also a testimonial to one's ability to survive. The story of my patience grows thin though and I'm so very ready for someone to do something about the free floating scapula I have. It's a real pain in the neck, no pun intended, and as I enter my 33rd month of carrying it around I grow rather frustrated with it all together.

Thanks again for the help and guidance. More importantly thank you for sharing my story. I read it and I'm like wow that's my life, that's my story. It all seems so surreal, but I'm still here and I'm living proof that you can survive anything if you push yourself, and more importantly ask for help.

It doesn't matter who it is that you ask, or what anyone thinks of you for asking. If you need help don't be too proud or ashamed to ask.

There are so many good people in the world that there's no time to dwell on the opinions of or the lack of presence of people in your life who refuse to help you, try to make you feel bad for asking, or for the people who simply refuse to help because their purpose is misguided. There's no verse more true than "seek and ye shall find." If you look hard enough you can and will find the people who will accept you, love you and help you without condition.

Sincerely,
Jason D. Nefores (CF-L1)

Sep 09, 2015
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Next step is the Workbook
by: Don from Ability Mission

Jason,

With your story now published, you can move on to the Workbook, which shows you how to use your story to get the help you need.

Best,
Don Coggan

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