When someone receives the words from their doctor that they have a life threatening or life altering diagnosis it can send their life and the lives of their loved ones into a tail spin.  It doesn’t make a difference if the diagnosis is cancer, a neuromuscular disorder, Alzheimer’s Disease, heart disease, seizure disorder or one of the multitudes of diagnoses that exist, the effects are the same.  Waiting for everything; the doctor’s appointments, surgery, diagnostic tests, and the results can seem like an eternity.  The emotions of waiting are two-fold: desperation for answers combined with simultaneous fear about what they will be. 

Surviving the days can be difficult. Faith, family, friends, focusing on the positive, and trust in the health care providers you have chosen are the most helpful. Nutrition, sleep, communication and maintaining some personal time are essential. Life and all of its responsibilities continues during these difficult times. Other family members must be cared for, work continues to demand time, other commitments must be met, caregiving roles continue, all activities of daily living still require time and attention, holidays occur and the unexpected continues to be ruthless;  roofs leak, clothes dryers break, and others get sick.

Utilize resources from the church, family, friends, social groups, home care providers, community, and ask for and accept help whenever possible. Speak to health care providers about medication to assist with sleep if necessary. Wandering thoughts will take you on wild journeys, filling the space that is waiting to be occupied with facts and answers, so focus your attention on tasks or events as much as possible and stay as positive as you can be. Realize that everything that is seen and heard are not messages predicting the future, they are just part of everyday noise. Individuals should grasp on to who and what supports them and don’t let go.

When a final diagnosis is received, a plan of care decided, and treatments, if any begin, it is time to establish a new normal.  This will not happen as suddenly as the old normal disappeared. It is important to make sure the disease or diagnosis does not manage any one’s life, instead it must be managed. It must be absorbed as part of the new normal lifestyle.

My daughter recently received a life altering diagnosis. The journey from diagnosis to results and treatment plan lasted three weeks, but seemed like a lifetime.  It would have been a different journey without faith, family, friends and our trusted health care providers. Work did not stop, holidays occurred, corporate office made demands, caregiving continued, insurance created problems and even the refrigerator broke.  The disease is being managed and a new normal is being established. As with many other things in life, we have moved on to Plan B, are managing it well, not letting it manage us and are thankful for every new day.