Choose Your Language:
Posted by: The Sumaira Foundation in Caregiver, NMO, Voices of NMO
My name is Jamie and I am Adam’s partner of 17 years. This is Adam’s NMO story from my perspective…
Everything was perfect in our lives; Adam had a good job and we were looking for our first home to purchase with our two young sons. Things could not have been any better….
Adam’s story of Neuromyelitis Optica starts at the beginning of 2015. I remember exactly when things started. There was a snowstorm and Adam we out to shovel the driveway before going to bed. The next morning, he woke up in a great deal of pain and had trouble walking. Naturally, he assumed he injured his back while shoveling snow. Because the pain didn’t go away, we went to see his doctor after which he was referred to a spine specialist and scheduled for an MRI.
When we went to see the specialist, I just knew it – something was wrong. The doctor reviewed to MRI results and almost immediately left the exam room to get the head doctor. When the doctor arrived, he explained that there was some apparent swelling of the spinal cord and Adam needed to get another MRI so they could see the whole spine.
The next day, we went to the 2nd MRI appointment still believing this was caused by an injury from shoveling. The MRI results came back; Adam needed to be seen by a neurosurgeon as well as an oncologist. My heart dropped,
We still didn’t know what was going but we were pretty sure, this was not happening because of an injury. The next day, we visited the oncologist. I was fighting back tears as we waited for the doctor to come in, looking over at Adam, hoping he wouldn’t see the worry on my face.
There was a long lesion inside of Adam’s spinal cord that the doctor suspected was a tumor. He showed us the MRI where we could see a long white area inside the spinal cord, almost the full length of the cord. The next step was to consult a neurosurgeon to discuss options.
We were at the neurosurgeon’s office the following morning. The doctor explained that if this were a tumor, surgery and even a biopsy would be very difficult. Adam needed to have a spinal tap. The results came back. Adam needed to see a neurologist who specializes in MS and related diseases. Adam was put through so many tests including but not limited to additional MRIs, another spinal tap, various labs, and even referred him to see another neurologist at the Mellen Center of Cleveland Clinic.
At the Mellen Center, he had a spinal angiogram. Both doctors concluded that Adam had Neuromyelitis Optica. We had never heard of this but found relief that is was not cancer. Learning more about this disease brought a new set of worries. Adam had already lost most of his ability to walk, suffered in pain, and would sometimes pass out. The doctor explained that Adam’s optic nerves had not been affected but a relapsing attack could take his sight or damage his spinal cord so bad that he could die.
I can’t even begin to tell you how helpless I felt. I just wanted to fix Adam. NMO has taken so much beyond the physical implications. It has put us under stress I never thought I could handle. It stole Adam’s joy for a long time. It took his ability to work and completely changed our family. But, overtime, we have learned how to cope and play with the cards that we’re dealt with.
Thanks to ongoing Rituxumab infusions, we’re grateful to share that Adam has not had a relapse. Adam has a wonderful doctor who genuinely cares about him. We are hopeful that new treatments and research will soon be available to Adam and other NMO patients. To anyone out there who has been diagnosed, just know that you are not alone. Keep fighting and stay positive. There will be ups and downs but we are all blessed to wake up each morning.
We have set up a GoFundMe page to ask for donations. Our family is living on my sole income. Adam is in the process of applying for disability which will likely take another year. I have trouble paying all of our bills every month. We are on the verge of losing everything. Adam is also in need of a way to transport his wheelchair, these ramps are expensive and are not covered by insurance. Please take a look at our page for more on Adam’s story.
I would like to sincerely thank everyone who took the time to read Adam’s story. I would also like to express my sincerest gratitude to The Sumaira Foundation for NMO for sharing our story and spreading awareness for all of those affected.
Published May 15, 2017
