Life with MS

“As far as sharing vulnerable cognitive moments are concerned, being honest about your struggles is the best way to shatter the stigma of dealing with mental concerns. Be upfront and share what does and does not help you through cognitive challenges, and learn to adjust.”
 
Jeffrey N. Gingold is an award-winning author, a frequent “MS Focus Magazine” contributor, and a self-described volunteer MS advocate (though he says his favorite moniker is simply “Dad”). He is also something of a pioneer in the field of tackling cognitive challenges and MS.
 
Diagnosed in 1996, Jeffrey knew nothing about MS, saying that he “couldn’t even spell the word ‘sclerosis.’” While he experienced common first symptoms like optic neuritis and limb numbness, cognitive challenges started early for Jeffrey. “I repeatedly lost my presence, including where I was walking, driving, and what I was saying. My purpose was regularly derailed, leaving me confused and lost without explanation. But, at the time, no one related any of it to MS. Not even the neurologist.”
 
Jeffrey elaborated on his cognitive struggles, “It shouldn’t be so hard to find a word that is on the tip of my tongue, or to remember what I already started to say. My thoughts and memories are no longer reliable, but admitting it was the real challenge. While thoughts may not be erased, they are frequently blocked from convenient recall, including very familiar faces, names, locations, and tasks.”
 
Knowing that he wasn’t the only one dealing with cognitive challenges because of his MS, and since there was little-to-no assistance available, Jeffrey decided to take matters into his own hands. In 2006, Jeffrey released his first book, “Facing the Cognitive Challenges of Multiple Sclerosis.”
 
“It was the first book written by a person with MS from inside the mental twister of MS. While it was my MS story, I knew that many of the cognitive impediments were commonplace with other MSers. Someone had to open the discussion door. If people with MS could not understand the cognitive aspects of the disease and never discuss them with informed doctors, then they would remain untreated. Without acknowledgment of the cognitive obstacles, people would never reach for solutions, and then slowly lose pieces of their life,” Jeffrey said.
 
Two years later, Jeffrey followed that up with a second book, “Mental Sharpening Stones.” Instead of revisiting his own story, Jeffrey reached out to the MS community for contributions and collaborations for this new project. He said, “Before the cognitive symptoms of MS rewrote their lives, the contributors were involved in television, publication, the judicial system, and the military. While some of them are famous, others are lay people like me. They all bravely shared their MS cognitive challenges, as well as their successful strategies for coping with them.”
 
The irony of an author with cognitive challenges isn’t lost on Jeffrey. He detailed one of the most frequent struggles he faces during his creative process, “My thoughts are often delayed and easily lost, so it was vital that I remained organized and avoided distractions, especially while outlining and writing. Not every telephone ring or email needs to be instantly answered, but if I delayed recording a phrase, it wouldn’t be there later, only frustration over a lost thought.”
 
For his next publication, Jeffrey choose to tackle some very different subject matter. In 2015, Jeffrey published his third book, “Tunnel, Smuggle, Collect: A Holocaust Boy.” With this release, he moved away from the autobiography and self-help style of his first two books, and into the realm of non-fiction.
 
“It is the story of my father’s and grandparents’ survival and escape from the Warsaw Ghetto. Their resilience and determination in the face of overwhelming odds left a powerful legacy for me and our family to remember. We all face challenges, but that should not be the end point. My family’s survival in Nazi-occupied lands inspires me to deal with any life difficulties, including MS,” he said.
 
Being one of MS Focus’ resident experts in the field, Jeffrey offered tips for fighting the cognitive challenges of MS. “First, I have always relied upon a ‘safety person’ to get me through cognitive fog moments. For me, it is vital to have a trusted support person who understands (in advance) my cognitive disconnections and can get me to a safe location to regroup. Along with that, always remember to thank others, who help you, they deserve frequent acknowledgment.”
 
His next tips are some that anyone can benefit from, but especially those with MS. “You should seriously declutter your mind and living space. Ask for help and get it done. Crossing off ‘to-do’ items is empowering. Also, if you have an important thought, write it down immediately. Even a couple of words on a napkin may trigger the thought later. If it is a precious thought, don’t trust it to your memory.”
 
Jeffrey also suggests strengthening your body as well as your mind. “Exercise your mind and body on a very regular basis. Within your doctor’s guidance, challenge yourself and vary the routine. No one else can do it for you. With MS, nothing improves by itself.”
 
Jeffrey’s final bit of advice is one that he frequently follows, and it may be the most important one of all. “Share what you have learned with other MSers. It is important to realize that you are not alone and don’t have to silently endure the cognitive and physical challenges of MS. Learning from those who have endured similar MS experiences is priceless, so don’t waste time and energy reinventing the MS wheel of coping.”