Nicole Phelix’s Response to “Building momentum in young stroke research and services in Australia”

By Nicole Phelix, 26, Young Stroke Survivor, Myrtle Beach, South Carolina

As a young stroke survivor, it is uplifting to hear others are driven to research the gap in services available.  There are several elements of young stroke lacking research, data, and advocacy; prevention and services for survivors are undoubtedly some of these.  The treatment and care I received in the hospital, acute inpatient and outpatient rehabilitation settings was outstanding, and the progressI’ve made thus far is all thanks to the caring providers in each facility.  Knowledge of young stroke and insight as to how it impacts individuals differently at particular life stages is lacking across the board, though.  At 26 years old, I was not expecting to encounter stroke.  My family and friends were in disbelief, as well.  The medical professionals working with me were well trained, but they appeared just as shocked as we were.  The individuals dictating the various aspects of my recovery knew the impact of stroke on elder patients and their lives, but my situation seemed a bit foreign to them.  Information on the internet is even scarce; my caregivers and family members found it difficult to help without such knowledge.  We were all relying on someone else to know something more than we did, which is a scary thing when you are dealing with significant impairments to your physical body and life circumstances.

Support groups for young stroke survivors are hard to come by.  I’ve chosen to be part of a support group which is available for survivors of all ages.  While I am extremely grateful for the sense of community and belonging it provides, can we really expect a 75-year-old survivor to grasp the impact of stroke on employment, family planning, financial dependency, etc. for someone under the age of 30?  Just as I cannot truly understand the impact of stroke on someone in a later life stage, I cannot expect someone else to understand the impact on survivors in the life stage of which I currently belong.  Telehealth consultations and internet programs mentioned in this article can certainly be beneficial.  The need to be part of an identifiable community among other people with shared experiences is crucial.  I am fortunate enough to have generous parents/caregivers and a village around me who provide love, encouragement and support, but the feeling I get when talking with (or reading about) other young survivors with similar experiences is unparalleled.  Access to medical personnel, psychotherapists, and other professionals trained specifically in young stroke through such programs would also be beneficial.  Having professionals available to answer questions about disability claims, healthcare/insurance options, employment specialties, family planning information, etc. would be helpful to many young survivors.  There are already professionals available with knowledge on each of these topics, but can these professionals provide information specifically related to our population’s needs?  I’ve personally had too many experiences with professionals redirecting me to someone else because they are unsure of the information, and this is just the beginning for me.  Rather than being passed along a string of individuals (and usually finding ourselves without a firm, educated answer at the end), it would be wonderful to have professionals in multiple fields trained to assist young stroke survivors.  Even within our category of “young stroke survivors”, we each have differing deficits, losses, changes, and impacts.  It is imperative to be mindful of this while exploring new solutions and services.