Watershed Moments by Deborah Robins is licensed
under Creative Commons Attribution-NonCommercial
4.0 International License.
NB Not to be construed as medical advice.
Source: Schrans DGM et al., Transition in Duchenne Muscular Dystrophy: An expert meeting report and description of transition needs in an emergent patient population, Neuromuscul Disord (2012), http://dx.doi.org/10.1016/j.nmd.2012.08.009
Growing up is predictable & leaving home is becoming par for the course
Leaving paediatric/adolescent services will happen
Leaving school or graduating university is anticipated
Discuss options and make decisions in advance, in order to reduce anxiety.
Anticipated but Unpredictable
It is anticipated that respiratory function will decline but not the moment when ventilator support is needed
Consider adaptations and equipment in advance. Discuss benefits and risks to keep you participating fully in life.
It is anticipated that walking becomes impossible, but not the moment when a wheelchair becomes necessary
Problems incidental to your condition may be unexpected
Injury, sickness, emergencies etc can happen to any of us, but such events are complicated further by our disorder
Ideally, generate hypothetical protocols with your care team (specialists, therapists, aides, etc.) in advance, in order to optimize quality of care and comfort.
Draw on wisdom and judgment to be open minded and critical in making decisions on your own or as part of a team.
Research and ask questions. Discuss with your family, medical team, palliative care team & friends.
Remember, for many medical watersheds there will be more than one option.
Everything that starts must end. Everyone who is born must eventually end. But it is difficult for any of us to discuss the possibility of death.
We can draw on our character strengths like: perspective, gratitude, spirituality, love and courage; to invert our fear of worsening health into discussions about who and what we treasure and what we want the rest of our lives to be like.