ANF News Express

AANEM Foundation News Express

Meet James Higginson: Award-Winning Artist and Guillain-Barré Syndrome Survivor

Photographer/director/artist, James Higginson, has accomplished much in his 60 years. Among his numerous accolades, he has received an Emmy Award for his set decoration work on the 1980’s show “Pee-Wee’s Playhouse,” international film festival awards for his 2012 feature length experimental art film, “Willful Blindness,” and has completed a new documentary, “Devout.” James was hoping to release his documentary in 2017, but 6 months ago, while working on house renovations, his hands and feet went numb. 
“I thought this was weird, but I chalked it up to being 60-years-old and working like a dog doing reconstruction as though I was 20-years-old,” said James. 
James noted that over the course of the next 4 days, his legs and arms became increasingly heavier. After 2 days, he had trouble walking up stairs and explained that he could almost observe his muscles progressively failing to function. James says he tried to deny there was something wrong until he was literally crawling around his house unable to walk or support his body weight to stand. 
James has been living between the US and Germany for about 13 years, but he also purchased a home in the small Sicilian village of Gangi; Gangi is where James was when the numbness in his body set in. After crawling around his new home, numb with pain, James was carried out of his home and loaded onto a plane to Berlin, Germany, where he immediately went to the hospital. 
“My regular German doctor had suggested I go to the Aguste-Viktoria Hospital since they have, in his opinion, the best neurological ward in Berlin. Perhaps I was lucky that on this night, the receiving doctor in the ER was one of the neurological team doctors. I believe she saved my life. Within 3 hours, I had full body x-rays, an MRI, and a spinal tap. By 6:00 am, she had the diagnosis and was confirming with the head of neurology. When the doctor uttered the words, Guillain-Barré syndrome (GBS), I had never heard of this insidious, aggressive disorder nor known anyone who had been afflicted by it,” he said. 
As explained on the AANEM website, Guillain-Barré Syndrome (GBS)
  • Is also known as Acute Inflammatory Demyelinating Polyradiculopathy (AIDP).
  • Can occur anytime in life and in anybody (male, female, young, or old). 
  • Affects 1 out of every 100,000 people. 
  • Is a nerve disease with significant weakness as the primary symptom. 
  • Has an unknown cause. 
    • It is possible GBS is the result of an autoimmune disease. 
    • It has been noted that approximately 50% of GBS cases occur following an acute viral or bacterial infection. 
  • Has a history of developing rapidly. 
    • Symptoms may worsen up to 2-3 weeks after presentation to the point of complete paralysis and will then gradually improve over the next several weeks if the symptoms are mild. 
    • GBS, when severe, can affect a patient's ability to breathe on their own. 
    • Patients with severe GBS may take up to 2 years to recover, and this recovery may not always be complete.
“When the doctors were 90% positive I had GBS, they wanted to immediately begin the immune globulin intravenous (IVIG) treatment since the numbness had progressed up to my waist. They would perform the electrodiagnostic tests the next day which are necessary for a 100% GBS confirmation. They feared that if they waited on the IVIG, the disease could progress into my chest cavity,” James explained. 
As you can imagine, a lot was going through James’ mind when he received the GBS diagnosis. 
“When the doctor told me what it was, I could barely focus. I only wanted the pain to end, or to die. Either was fine at that point. I think I said, ‘Do whatever you need to do if it is possible to save me and/or stop this pain.’ I was not even focusing on the fact that I was paralyzed from the waist down,” he said.
“I am so very fortunate that 7 days after the initial onset of the first symptoms, the disease had progressed slowly. Why, I will always wonder, but in my case, the combination of a slow progression and the decision to immediately begin treatment spared me insurmountable further body, muscle, and nerve damage. After the first IGIV treatment, the numbness had progressed up to my ribcage, but thankfully, that is where the disease progression abated.”
It’s now been 6 months since the onset of James’ first symptoms. After 4 months in the Berlin hospital and Rehabilitation Clinic, James went back to the US to visit family on the East Coast and is now living with friends in Los Angeles. Once a month, he visits his doctor and neurologist. 
“I went from an extremely independent, active 18 hours a day/7 days a week schedule to a mere shadow of my former self. My day consists of periods of exercise and rest, meal preparation, eating, and sleep. I spice up my weekly schedule with visits to the doctor and physical therapy,” James noted.
Unfortunately, James has not been strong enough or able to work since the onset of his GBS. This creates a whole other set of worries for him. 
“Everything in my life has been turned upside down and all projects have been put on hold. I have had to postpone the release of my latest film project, stop work on any TV projects, and have not been able to begin any new art projects. My stamina and energy levels are too low. If I am not working within the next 6 months, I will be financially ruined and monetarily bankrupt,” he said. 
The hope is that James will feel strong enough to work again soon. In the meantime, he has been documenting his journey in a GBS blog (view it for yourself on Instagram at @photo_higginson_ph) and making future plans to help spread awareness of the disease. James believes that getting the word out there about GBS will help others in the future. 
“GBS is a disease that I would not wish on my worst enemy. I will do whatever I can to spread the message of GBS so to spare others pain and possible financial ruin. The power of social media is real and we are all connected. It is an obvious choice to me to be open and share my journey, the good and bad, with others,” he said. 
James has received a positive reaction since beginning his GBS blog. 
“I have received so many calls, emails, and messages from my family, friends, colleagues, prior students, and new acquaintances, and I thank them for the words of support, encouragement, and love. It means so much! I could not get through this without them all. I have also appreciated hearing the stories from other GBS survivors. Sharing their stories with me has given me hope and inspiration to push harder,” James explained.
It is that human connection that is helping James now and got him through those early days of recovery in Berlin. 
“Though it seemed I was alone in Berlin during my recovery that was absolutely not the truth. I was speaking often with family and friends and received daily calls from my mother, my mentor and friend Enno, and dear friend Judi. Whether I was feeling well or horrible, it didn’t matter; they called. They never missed a day. I came to depend on this constant.”
James would like to see more research conducted on GBS, so that better advice and guidance can be given to patients. 
“There needs to be a quantitative analysis on GBS symptoms and effects. The most frustrating thing I heard over and over again as an answer to my questions was, ‘We really can’t say because each GBS case is individual.’ There must be a way to compile and compare GBS recovery cases.”
James says that it’s important to support scientific research and education to gain a deeper understanding of this disease.
“If you have never heard of GBS, then that in itself is a reason to support an outreach and education program to spread awareness and understanding so the public knows the onset symptoms.”
When asked for a quote that gives James inspiration, he shared this: “We are never given anything we cannot handle. What we do with each challenge and how we move forward is the true test of individual character.” Six months ago, James was given the biggest challenge of his life: GBS. His desire to overcome this terrible disease, to battle it with dignity, and blog about his remarkable journey has proven to be an inspiration to so many. 
Make a Donation
With your help, the AANEM Foundation can fund research that will help improve the lives of patients with neuromuscular diseases, like James. Together we can support researchers that are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today.

August 2018 Update from James
James provided us with a video update in August 2018 with good news on his recovery, details about his future plans, and words of wisdom for those with GBS. View James' video

View Related News Stories:

  Patient Stories

Recent AANEM Foundation News

Meet the American Neuromuscular Foundation's Public Board Member

Connection Is Key: How One GBS Survivor Is Making a Difference Online

New Jersey Mother Fights for More SMA Testing of Newborns

Growing Up With FSHD: A Young Woman's Effort to Raise Awareness About the Rare Neuromuscular Disease

Dr. Alexander Chamessian Receives ANF Development Grant