Two years ago John asked his family for help. He suffers from Scheuermann’s Disease—a degenerative spine disorder—and the constant pain had become unbearable. He needed relief.
Who is John Smith and why should you care about him? John is my brother. And now our family is living the opioid crisis as John struggles with pain management through doctor prescribed medication.
John needs pain relief, but managing it is a daily struggle. Along with John we are actively trying to eliminate the opioid use by seeking out other alternatives for chronic pain. Our challenge is to find the right alternatives.
(John age 17)
(John age 21 far left--Our brother Jake and me, Jessica)
(John age 28 (far left)---Our family))
As a child, John always sought adventure and was the daredevil. From skateboarding and rollerblading -- to snowboarding and bicycling. He launched a ska band in middle school and continued to play into his twenties in Twin Cities venues and released two CD’s along the way. He is a deeply gifted visual artist, has received commissions for his pieces and hopes to make commissioned painting part of his future.
(One of many pieces of John's art)
(One of John's many pieces of art)
John put himself through college, volunteered his time at Abbott Northwestern Hospital and taught disadvantaged kids computer skills. He was a sought after web developer and graphic designer, but now lacks the concentration, pain-control and strength to complete new projects. His dream of establishing himself as an artist has been put on hold and his entire life has been put on hold indefinitely.
John has lived through 19 years of severe back pain. Through those years, he has received multiple diagnoses from many different doctors. He has tried 15 courses of physical therapy and other forms of alternative therapy including, chiropractic, massage therapy, acupuncture, psychologists, trial and error of pain meds, a trial of an implanted intrathecal pain pump, and an implantable nerve stimulator. None of these provided consistent relief or alleviation of pain. He cannot continue this fight by himself. If only there were surgeries, alternative treatments or palliative measures which might control his anguish.
On a pain scale of 1-10 he reports usually a 7-9. (Sometimes he reports an 11 and it absolutely breaks our hearts). A good day is around a 7. He is in bed 22-23 hours a day. He has been unable to work for over a year. He can’t stand, sit, walk, go up or down stairs without increasing his pain. When he leaves the house, it is typically for doctor's appointments.
(John's typical day---April 2018)
His condition is called Scheuermann’s Disease. It begins in adolescence during growth when the vertebrae develop abnormally and begin to change from a healthy rectangular shape to a triangle wedge shape leading to the degeneration of the discs. This can cause severe kyphosis or hunch back, but not in all people, some just have debilitating, chronic pain. Surgery is not recommended for John. While the disease was not disabling in his adolescence, it has since progressed at an insidious rate, subjecting him to untenable chronic pain. This is not all. At the beginning of this month after waiting three weeks for bloodwork to return, he was diagnosed with Cutaneous Lupus--a painful autoimmune skin disease. He has lesions that grow and spread. These lesions often times arise on the areas in which he already has the most pain in his back.
Through it all, he has shown strength, resilience and perseverance and much gratitude for all of the help he receives. He's never given up hope, but depression and anxiety are now his constant companions. John can no longer fight on his own, which is why we are asking you for help.
At this time he is exhausting all of his financial resources. He has applied for Social Security Disability Benefits and has been recently denied. The appeal process could take two to three years. Right now, he is trying to avoid the foreclosure on his home. As a family we continue to support him in every way that we can, but the situation is dire.
We still have HOPE!
And at this time we are asking for your help…
The path forward:
We will continue to advocate for treatments for John other than physical therapy (it has only led to increased pain, typical with Scheuermann's) and opioids, which can lead to addiction or death. Unfortunately, these are the two most prescribed treatments for those with chronic pain.
Our next step is to pursue admission into the Courage Kenny in-patient chronic pain rehabilitation program. The program teaches coping skills for chronic pain through engaging in health behavior changes over time, including minimizing dependence on opioid pain medications.
The cost of treatment:
The cost of the three week program is $24,000. He has applied for a cost share program, but it is not guaranteed, nor would it cover the entire cost. There are other treatments that have been recommended by his pain clinic, which unfortunately, are not covered by insurance either. They are a variety of treatments and injections with costs ranging from $2,000 - $20,000 apiece. He has had one of these treatments which yielded some benefit in one area and more benefit may be seen if repeated in other areas of his spine.
Any relief John receives from the Courage Kenny program has potential to set a precedent in treatment and insurance coverage for individuals with many of the same challenges.
How your contribution will help:
If we reach $2,000, John will be able to receive one critical, palliative treatment.
If we reach $20,000, John will be able to participate in the Courage Kenny Program as recommended by his doctors. If we surpass that amount it would greatly increase his quality of life by providing for his daily needs to include paying for energy and water bills and decreasing the chance of foreclosure on his home.
Thank you for taking the time to learn John’s story. Thank you from the bottom of my heart for any help that you are able to offer. Your contribution will be a lifeline for John and our family. On behalf of my brother, deepest thanks and all good wishes to you and your families.
- Neil Ross
- Brad Gottlieb
Organizer and beneficiary
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