Most people understand what an apprenticeship is: a system of training in which a person called the apprentice learns a trade or profession through hands-on experience under the guidance of a skilled professional mentor or master. Apprenticeships typically combine on-the-job training with classroom instruction.
No Apprenticeship or local mentoring network set up to help people traverse their medical journey with MS, and this seems like an opportunity that a health system would consider as part of their community building and outreach. We have this through the navigators at the national level of the National MS Society.
If this definition extended to MS first three years’ of disease tracking and support, then the patients with MS might have a chance to have more skills to understand this incurable disease, feel more actively supported, and get real and live mentoring advice rather than the mantra of “…see you in six months….you appear stable”. Health care professionals need to extend their discussions into the “could” and the “might”; this would offer assurances that the medical professional has resources to share.
In Washington state, the National Multiple Sclerosis Society has documented that there are more than 14,000 cases, the most prevalent of cases than anywhere else globally. Without a cure, a cause, or an explanation for this prevalence, one might think that the medical community would be on the frontline of care for those diagnosed with MS. Yes, a neurologist will prescribe the DMTs and MRIs; however, these are far and few between, and do not cover the trauma and daily questions of those with MS. My suggestion is not to overburden the health system but rather push it to offer more information and resources locally other than the 10-20 minute checkups.
In my three years of MS experience, aside from the national societies and newsletters I have discovered myself, there has been no local fostering of such an apprenticeship for disease comprehension, how to accommodate my changes, talk through my concerns and changes, and deal with the fears of what might be next.
My neurologist was surprised at my disclosure that the diagnosis was “traumatic.” As an adult late onset diagnosed, how could this sudden incurable disease not be? It was my primary care physical who suggested some therapy for anxiety and trauma after two years of living with the disease, not my neurologist.
MS cases are not going to disappear; it is a lonely disease that comes with twists and turns that medical professionals do not adequately explain—I mean really explain rather than say this symptom is shared by 80% of those with MS. The data sidelines the needed real-time advice and resource sharing.
So, it’s like plant purchases, we purchase for grvowing zone, and thus, we need advise for coping zones.
MS Fortunate 