Choose Your Language:
Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
As with all things in life, everyone’s journey is different. My journey has five segments (so far). The first segment is pretty normal. I was blessed to have lived a full life. I grew up in the middle class, got a good job; got married; had two wonderful daughters and worked a full career. I retired from that job after 32 years.
During that time, I was very active. I played sports, hiked the 4000 footers of New Hampshire (a list of mountain peaks above 4,000 feet in the state of NH), and I enjoyed playing golf, camping, biking and kayaking. I stood on the Great Wall of China and stood inside the Sydney Opera House! How much better can it get than that? Life was GOOD!
Easing into retirement!
And that’s when things started to happen to make my life even more challenging! In 2007, I was diagnosed with Fuchs’ dystrophy; a genetic cornea condition that required cornea transplants. I had the first of many cornea transplants in 2009. I was also diagnosed with Sjögren’s syndrome (dry eyes, dry mouth autoimmune disorder).
After many complications, I became legally blind in 2017. As a result of glaucoma, I am left with one usable eye for my vision. I got a guide dog, Clancy, to help me get around. Since I no longer drive, he helps me walk the local streets and do things that I need to do to live my NEW life.
In May 2022, I was found on my bathroom floor, unconscious. I was sent to Mass General Hospital in Boston, where amazing doctors tried to find out what was wrong with me. I had many tests including MRIs. I spent a month there, where I was diagnosed and treated for hydrocephalus, enlarged ventricles on the brain due to blockages of the natural drain path of the cerebral spinal fluid. They installed a shunt in my head to drain the fluid around the blockage to my abdomen. If that wasn’t enough, I was intubated for 3 weeks while they continued to try to find the source of my problems.
While I was being tested at Mass General, they found that I had lesions on my spinal cord. Fortunately for me, I was in the “House of Dr. Levy!” He is well known for his work with NMO. My bloodwork was tested for the AQP4 antibody. It was positive which meant that I had neuromyelitis optica, also known as NMO. So, as a 65 year old male, I now have NMO (a rare neuroimmune disease). Later, I was also diagnosed with Lupus, another autoimmune disease. Apparently, once you have one autoimmune disease, you are likely to have more. In this case, more isn’t necessarily better!
After being discharged from the hospital, I had a meeting with Dr. Levy to discuss treatment options for my NMOSD going forward. He offered me 4 options. I chose an FDA-approved therapy, UPLIZNA, that would be infused every 6 months. This would suppress the symptoms of NMO but I will need to continue this therapy for the rest of my life. I am getting my semi-annual infusions at home, which makes it very convenient for me.
Other than balance issues, fatigue and male sex drive, I was asymptomatic. I quickly got connected with The Sumaira Foundation and found support groups for this very rare disease.
Through the support groups and informational events, I heard of so many stories of people being paralyzed by this disease. I am grateful that my disease was found early and didn’t affect me as bad as it could have.
I spent the better part of four months working with physical therapy just getting to where I could walk again without a walker or support cane. Until I could do that, I could not get my boy, Clancy, back.
Finally, I was able to get to a point where he came home and we bonded again after a long separation. I am happy to say that together, we walk the sidewalks of my town together again. On good weather days, we walk about 2-4 miles a day. Of course, I had to work back up to that level but here, we celebrate small successes.
I am grateful for things. The first is my amazing support system of family and friends! Then, there are the advances in the medical industry today! I don’t know where I would be today without both of those. There are so many people living and struggling with this scary disease; many of whom are inspirations to me to keep pushing forward and continue to write more chapters of my life.
My attitude has always been that, as bad as things appear, they can always be worse. Sometimes it seems that they do always get worse. But even where I am in my life, it could still be worse and I am grateful for the life that I have lived. I just wish that I liked rollercoaster rides more!
