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Examiner
  • Diane Mack: CJD is rare but horrible disease

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  • The recent experience with my father’s passing and funeral has opened my eyes to death and grief. In spite of having knowledge of brain diseases, due to my daughter’s brain injury at birth, it is taking time to heal.
    I recently heard from my friend Beth, whose husband passed away from a brain disorder, unknown to most.
    According to the National Institute of Neurological Disorders and Stroke, CJD is a disorder which was frequently identified as dementia, such as encephalitis or chronic meningitis.
    “Creutzfeldt-Jakob disease (CJD) is a rare, degenerative, invariably fatal brain disorder. It affects about one person in every one million people per year worldwide; in the United States there are about 300 cases per year. CJD usually appears in later life and runs a rapid course.
    “Typically, onset of symptoms occurs about age 60, and about 90 percent of individuals die within 1 year. In the early stages of disease, people may have failing memory, behavioral changes, lack of coordination and visual disturbances. As the illness progresses, mental deterioration becomes pronounced and involuntary movements, blindness, weakness of extremities, and coma may occur.”
    May I share Beth’s feelings?
    “The girls, our daughters, and I have been dealing with Bob's death since May 5, 2012, every day. It doesn’t get better, but we learn to cope better.
    “It was just a month from the time we took him to the first hospital visit, until we buried him. The disease that killed him, CJD, Creuttzfeld Jacob Disease is a brain disease that can lay dormant for many years. There is no cure, no treatment.
    “We brought Bob home on April 26. By that time, he was under Hospice care. His last nurse was a former student, as was a hospital nurse.
    “The school, Longview Community College, was wonderful in seeing to my needs, and attending all his services. The LDS Lee’s Summit 1st Ward was perfect, giving much support, even now. They truly look after the widows.
    “The ward saw to it that Bob was never alone, in the hospital when I took a break. Someone he knew was with him. The ward sisters cleaned the house and arranged for equipment from Hospice. We were amazed by the number of students, administrators, and faculty who came to the services.
    “Our first year, we could not handle a Thanksgiving since it was Bob's big day. So, the three of us went to Italy for 10 days. We went to many of the same places Bob had traveled to, when he was in the Army during the Vietnam era. We met in Washington, D.C., and flew the big airplane to Rome.
    Page 2 of 2 - “Last year, we rented a cabin in Marcelline, Missouri.
    “Our two daughters continue to live their lives in Los Angeles and Washington, D.C. We get together every Sunday using Skype on Sunday afternoon.
    “I stayed here. No place really to go with 3 kittens to take care of and the house, of course.
    “I try to keep busy but find I weep and cry often, still, spontaneously. Friends have gotten used to my weeping.
    “I did serve a year at the Bishop's Storehouse as a Service Missionary. The people there were great. This was a very good experience.
    “The neighbors are great, too. A close friend is my rock and continues to help even now. I have lost a lot of my desire, for just about everything including eating. I am sure it will come back, soon enough, since it has been only 2 years.”
    Readers, the family set up the Robert E. Smith Memorial Chemistry Scholarship for those in the medical sciences, at Longview College.
    Your donation could bless many lives. Thank you.
    Diane Mack is coordinator of Putting Families First, Jackson County’s Family Week Foundation. Email her at jacksoncountyfamilyweek@yahoo.com or visit www.jacksoncountyfamilyweek.org.
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