Jeffrey N. Gingold
In Charcot's Shadow: A PWMS Perceiving MS Cognitive Challenges
What would Charcot say? As the father of Neurology [19th Century], he was one of the first individuals to note the thinking difficulties in people diagnosed with MS. Jean-Martin Charcot probably would feel validated by the dozens of recent studies, which have researched and substantiated his early observations. But he would argue that it’s not the end point, I suggest.
If I walked into a NMSS event and sat down, you would notice my Cherrywood cane with a nickel-plated handle. You may conclude that I am disabled from MS, but that’s only half the story. Just half. For instance, cognitive disability may cause a PWMS to lose employment more often than from their physical impediments. It’s difficult to see that invisible half in action, but the impact is real.
There remains a vast social and personal stigma in acknowledging that you have a mental disability, I also suggest. For a PWMS, cognitive symptoms are stealth, disturbing to admit and troubling to articulate to others. While the hobbled walk and cane are obvious, my mental limp is difficult to detect, cope with and treat. An MS cognitive obstacle can be as damaging and challenging to overcome, as the numbness in your legs and whole-body fatigue.
You see, when my toes and leg are numb, my mind can also be fogged. When my lost equilibrium throws me to the ground, I may also forget why I walked into the room. While I need assistance to stand from a chair, words disappear leaving unfinished sentences, lost thoughts and presence. MS obscures my vision with Optic-Neuritis, but recognition of familiar names, faces, locations and tasks is confounded by cognitive challenges.
It is all MS and we don’t get to choose the compounded symptoms or when they occur.
I advocate for on-going cognitive assessments and sharing successful coping strategies. When MS cognitive impediments are acknowledged, but later ignored, a PWMS is left with mental stumbling blocks. Treatment is not complete. Charcot would want the blocks recognized and removed for people with MS, I suggest.
Jeffrey N. Gingold, internationally acclaimed author of the award-winning book, Facing the Cognitive Challenges of Multiple Sclerosis, 2nd Edition (Demos Medical Publications, 2011) and Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis (Demos Medical Publications, 2008).