About 1 million people in the United States have been diagnosed with Multiple Sclerosis. That is only about 0.3% of the population (lucky me). Not only does that affect those diagnosed, but it also impacts 1 million families and caregivers. Everyone seems to know someone with MS and everyone’s experience is different. This is my story.
My first symptom was at age 42. I recall a tingling sensation at the tip of my toes. I attributed this to possible frostbite. However, I then began to experience numbness in my left hand and forearm. I went to an orthopedic who determined that it was an ulnar nerve problem. When surgery to move the ulnar nerve did not work the doctor then tried carpal tunnel fixes. After doing research on my own I mentioned multiple sclerosis. The doctors did not think that was the cause.
Despite that, I proceeded to seek the opinion of a neurologist. In May 2006, after an MRI and a spinal tap, I received my diagnosis. I was diagnosed with Relapsing Remitting Multiple Sclerosis. I went to the University of Minnesota and the Mayo Clinic to get a second opinion and seek out possible plans of action. I decided to go with the University of Minnesota because of their aggressive plan to start disease modifying treatment. I started with a medication called Copaxion. After multiple bad reactions to this treatment, that resulted in several hospital visits, I switched medications. I began using Rebif to delay progression of the disease.
For the next six years I continued to take these disease modifying drugs to slow down the progression and tried to live my life as normal as possible. Unfortunately, some things had to change. My football officiating career was cut short since my leg started dragging and I went from jogging regularly to having to ride a stationary bike for exercise. I continued working very aggressively in my sales career which required a lot of travel. As I noticed the disease progressing I was actively looking for a new cure. I was continuously inquiring with the University of Minnesota about any trials coming down the pipeline. I learned of a new trial for Ocrelizumab infusion.
In the Fall of 2012 I was excited to start the trial of this chemotherapy treatment which was to deplete my B cells in the hope of rebuilding them so they would no longer attack my Mylan nerve endings. To participate in this trial I had to discontinue use of any disease modifying drugs. Unfortunately, I was given a placebo during this trial and I suffered a relapse at one of the nerve endings at the base of my brain where it connected to the spine. My mobility was severely impacted. The lesson learned is that disease modifying drugs do work to slow the progression of Multiple Sclerosis. Despite the unfortunate result, I do not regret going on this trial as it was a step towards finding a cure and I am desperate for a solution to my situation.
I was taken off the trial and injected with a high dose steroid treatment. This reversed a majority of my mobility issues. I then began an oral treatment of Giliniam to slow the progression. Unfortunately this new lesion continued to deteriorate my mobility. I began utilizing mobility tools beginning with a cane and then moving to a walker and eventually a scooter wheelchair. I continued working for Oracle until August 2015. After a couple of falls in hotel rooms when I needed to call for help to get up, my doctor felt there was too much risk for me to continue working. Upon further evaluation it was determined that I would go from short term disability to long-term permanent disability. This was a hard decision since I really enjoyed my job and the people I worked with. It was also difficult since I was the primary provider for our family and my career also gave me an identity. My family was very fortunate to have disability income we could rely on.
During the Fall of 2015 I made the transition from a scooter into a wheelchair. Unfortunately, it’s a one-way trip because once you’re in a wheelchair you don’t ever seem to get out. Despite this, I have found ways to continue living my life. My friends put together a fabulous fundraising effort to buy me a handicap accessible van that allowed me to roll the wheelchair into the van and even drive. I have been able to continue living a very enjoyable life. We have a fully handicap accessible home. I’ve been able to travel abroad to visit my daughter in Barcelona, and take a month-long trip to Hawaii where they actually strapped me to a surfboard so I could go surfing. I also have a fabulous, loving service dog, Sybil.
Multiple Sclerosis affects each person differently. Typically MS affects males mobility much more severely than women, such as in my case. There are numerous ideas and suggestions of different things to try. Being desperate, I have tried them all over the years including; yoga, supplements, acupuncture, massage therapy, water aerobics, detoxification mineral supplements, prayer group, drug trials, physical therapy, occupational therapy, chemotherapy, chiropractic, medical marijuana, speech therapy, healing spiritual sand & holy water, and a gluten-free and Palio diet.
Fast forward to today, 14 years into living with MS, I have lost the use of both legs and arms making me a quadriplegic. I am bound to a wheelchair. I am continuing efforts to slow the progression of Progressive Multiple Sclerosis. Every eight months I receive a Ratuxion chemotherapy treatment. I also take a high dose of steroids monthly. I take Biotin vitamin supplement, vitamin D, Baclofen for spasticity and Gabapenten for nerve irritation daily. I have a PCA to assist me in my daily functions, range of motion and getting me in and out of my standing frame. I utilize assistive technology to help remain independent in operating functions such as my wheelchair, iPad, television and more. Most importantly, I have a large network of loving family and friends that provide tremendous support through this journey.
Ironically, my college buddies and I rode the MS 150 a couple of times in my early 20s. We thought it would be a good way to meet girls. Over the last few years now my kids have a significant group ride in the MS 150. They raise over $20,000 each year. I am very proud of them.
Unfortunately, it is not just me that has been affected by this disease but all of my friends, family and caregivers are also impacted. My hope is that others can be blessed with similar support systems I have and most importantly someday find a cure for this disease.