Those Less Fortunate
The following story is true and submitted by my friend Peter D. from Toronto, Canada. Thanks Peter for sharing with us this story of a rare but dreaded disease.
| "NO BIG
DEAL - YOU HAVE THE FLU" "OH YEAH?" (OR) THE RARE DISEASE WITH THE LONG NAME
Guillain-Barre Syndrome... On June 28, 1997, my god-daughter, Courtney, had finished her shift at Hamilton General Hospital. She is a Registered Respiratory Therapist and was staying with mutual friends in Waterdown, Ontario, because of the driving distance from her parents' home in Niagara-on-the-Lake. My wife and I happened to be visiting when she arrived after work looking fatigued, pale, with no energy. Her symptoms worsened, she went to a nearby walk-in medical clinic and was told she had the flu (the symptoms are similar). A second medical opinion the following day the hospital reached the same conclusion and she was told to go home and rest. Her father brought her home. She gradually weakened and finally she actually self-diagnosed, she insisted that she had acquired "Guillain-Barre Syndrome", a debilitating illness that strikes only one in two-hundred thousand. By the end of the third day she lapsed into partial paralysis and was rushed by ambulance to Hamilton General Hospital and by the end of that day she was totally paralyzed, able to breathe only with mechanical support of a ventilator. The syndrome was finally recognized and appropriate care began. Initially, the medical staff was facing something virtually unknown. Specialists were brought in. Before Courtney's personal progress is discussed any further, a little technical information gleaned from the Internet may help in understanding this rare condition. So rare that it is often misdiagnosed sometimes resulting in death or permanent disabilities recovery...simply because treatment was not instigated soon enough. ...the onset of paralysis is usually preceded by a general feeling of weakness, pins and needles, and cramps. Alternatively, the syndrome may begin suddenly and end very unexpectantly. In all cases, the weakness spreads rapidly from the lower to the upper parts of the body with a tendency to become generalized. The severity of the case is usually indicated by length of time to maximum illness and at that point, it reverses and the healing process hopefully begins. ...maximum intensity can vary from a few days up to fifteen days in severe cases. When the paralysis reaches its peak, the danger of death by asphyxia is always imminent but in most cases, death is avoided by professional intervention, e.g., by a Registered Respiratory Therapist, ironically, such as our subject patient, Courtney. ...there are no two cases alike. Fortunately, the recovery rate is 95% but the degree of recovery varies from case to case. Some patients recover totally within one year, others are left permanently unable to walk or to manipulate limbs, fingers. G-B-S can affect anyone, young or old, male or female. It is not hereditary and it is not contagious. Although G-B-S improves spontaneously, other factors can assist in recovery: -good nursing and medical care. -physiotherapy (most important) and hydrotherapy (in pool). -plasmapheresis (I don't understand this either but it involves the exchange of blood plasma carried out in the first few days of treatment). -counselling, but most important is the support of family and friends. During my involvement and study of G-B-S, it is woefully obvious that more research is necessary to allow doctors to better diagnose and treat victims of this uncommon illness. Back to the case at hand....my god-daughter is currently recovering well and is now allowed to go home on weekends. She is in an electric wheelchair and has regained a minor amount of movement in her legs, fingers, bodily functions and speech...a long way from the total paralysis when the only operative function was slight eye movement which she used to communicate. She now eats normal foods and says that even broccoli is better than that "green stuff" dripped into her stomach via tube. Most important in her recovery, in my opinion, is her fabulous sense of humour which she somehow has maintained....here are a few examples: -drag racing in her electric wheelchair when the only movement she had was two fingers which were used to operate the controls. The hospital staff was impressed with her accomplishment but frowned on this dangerous activity, especially when her father took his ride. -an e-mail network of her friends and family has been established on the Internet and she sends and receives (via her father) messages around the world with an emphasis on humourous stories. -through the Internet and now in person, Courtney participates in support for other G-B patients with encouragement (and humour of course). -at a recent gathering, she demonstrated a newly acquired movement and much to everyone's amazement and delight, kicked her father in the shin (with love). A seemingly unimportant act to mention here but a very large accomplishment. Her doctors believe that a patient's fitness level prior to this illness is a key element in eventual recovery. In our case, she is an outstanding athlete. During her university days, she was a member of the University of Victoria rowing team and recently was playing competitive soccer in three leagues. Her determined spirit is evidenced by her recent discussion with a hospital counselor, as related to me by her father: Counselor "and so Courtney, because of G-B-S, what will your plans be if you cannot resume your job as a Respiratory Therapist?" Courtney "no, no. BECAUSE of G-B-S, I will become a better Respiratory Therapist." An interesting site on the Internet is dedicated to case histories, comments, and poetry submitted by former and present G-B-S patients. I quote an excert from one of those poems: If I am granted my every wish, high on my list will be to fish. If suddenly I find my lungs are strong, to show my happiness I'll burst into song. If a final wish is given from above, I'll wish for the chance, my family to hug. If God in His mercy answers my prayers. A lifetime of happiness will all be theirs... The poem continues but the message of hope is one shared by all G-B'ers.. Recovery continues!! |
I Pray for God's continued Blessings on Courtney, as well as for Peter who was recently diagnosed with cancer.
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