Dianne's MS Acronym
A person's name is the greatest connection to their own identity and individuality. Some might say it is the most important word in the world to a person. It's not the most important thing in my life, but multiple sclerosis (MS) is certainly a major part of my life. I thought I might talk about this adverse part of my life via an acronym of something also major, but special to me, my name:
D - Disability
Six years after waking to a rather scary morning and suffering strange symptoms along the way, the culprit was unveiled. I was diagnosed with MS, a chronic disease affecting the central nervous system (the brain and spinal cord). The severity, type, and duration of symptoms can vary greatly. Daily living is very difficult as, amongst other things, my fine and gross motor skills have been severely affected. Several years post-diagnosis, I am deemed disabled and medically retired, receiving disability benefits until I reach retirement age. Social Security Disability Insurance (SSDI) is a social insurance program that provides benefits to disabled workers and, if applicable, their minor dependents.
I - Incurable
MS, like my name, isn't going anywhere. Currently, there's no cure although there are disease-modifying therapies (DMTs) available to reduce the number of exacerbations and slow the progression of the disease. Other drugs can help manage symptoms - changes in bladder control, fatigue, spasticity, etc. A person can also adapt exercises to their physical needs as regular, light exercise can help preserve physical and mental health. I've found all of the above helpful to enhance my quality of life.
A - Autoimmune
MS is an autoimmune disorder which is a disease in which the body’s immune system targets normal, healthy tissue. Just as society uses my name to identify me, the immune system is designed to identify foreign substances and attack and destroy these bodily invaders. There are many autoimmune disorders that affect the brain, nerves, and muscles, but MS is the most common.
N - Neuropathy
My name makes me feel good, being a namesake, it was lovingly given to me by my parents. What doesn't make me feel good are sensations that stem from nerve damage. Burning in my lower legs, ice cubes in my feet, pins-and-needles, bugs crawling on me; these unusual sensations are a type of nerve (neuropathic) pain. Although the feelings seem to be in the skin, they are actually due to damage caused by MS which disrupts messages passing along nerves in the central nervous system. And to be clear, these issues are definitely not lovingly bestowed.
N - Natalizumab
Known by its brand name as Tysabri, natalizumab is a form of monoclonal antibody used to treat relapsing forms of MS and Crohn’s disease and administered intravenously every four weeks. The medication works by targeting and destroying certain kinds of cells in the brain to protect the central nervous system. The name Tysabri, like my own, I will never forget as it was the best disease-modifying drug (DMD) I've taken. Natalizumab patients are blood tested frequently to check for JCV antibody levels, and over time, because mine were elevated increasing my risk of developing PML (a brain disease), I had to stop. I switched to an oral DMD, Gilenya.
E - Emotional health
My name, our names are more powerful and significant than simply their characters as they represent every transaction we make - from banknotes to business relations to paychecks and beyond. The same is true when it comes to naming and identifying our emotions because it tends to lessen the burden they create. Psychologist, Dan Siegel, refers to this practice as “name it to tame it.” MS can cause significant anxiety, distress, anger, and frustration from the moment of its very first symptoms. Addressing, naming emotions allows the opportunity to take a step back and make choices about what to do and how to cope with them. Emotional well-being is an important component of overall wellness. Like other aspects of wellness, emotional well-being can be nurtured and enhanced, even in the face of changes and challenges - and MS.
Traits that help me along my MS journey
With all of the above said, my surname describes the traits in me that I continuously find important along my MS journey. They are:
S – Strong
C – Courageous
O – Optimistic
T – Tenacious
T – Thankful
What do you like to do to relax?