Living With Disabilities

LIVING WITH DISABILITIES

The Americans with Disabilities Act (ADA) was passed in 1990 and the Equal Employment Opportunities Commission (EEOC) was given enforcement power. This was a civil rights act that provided full equality in all forms of activity to persons with any sort of disability. While legislation helped open doors for many who are disabled, the ADA cannot help people walk, eat, speak, write, think clearly or otherwise live as they did before becoming disabled. Thus, there are millions of persons who have struggled to live with their disabilities.

Statistics related to Americans with disabilities are easy to find through the US Census Bureau and also from the University of New Hampshire’s Institute of Disability. Needless to say, older persons top the list of those with some sort of problem and statistics indicate that for those of us over 80, 71% are likely to have a disability. 8.1 million have difficulty seeing (2 million blind), 7.5 million with hearing loss, and 30.6 million have difficulty walking, climbing stairs, or need help. Many millions have alzheimers or some level of dementia (see previous blog on dementia).

One such stalwart individual is Bob Otterbourg who has been partly disabled, in a wheel chair, since the death of his wife five years in the past. He was determined to recover his lost mobility immediately after leaving the hospital and moving in his wheel chair, but no determination or therapy has increased his mobility these long years. For several years he resided in Hillcrest Nursing Center, the most upscale residence of its type in the Durham community. He tooled around the place in his motorized wheel chair, was a favorite of the staff, wrote a novel, and complained (rightly so) about the food. But the general inactivity plus the aging process tamped down his enthusiasm and he moved to the health services facility of The Forest at Duke, a popular continuing care community.

In his new location, he suffered with more modest care than at Hillcrest and his co-inhabitants were mostly people suffering with dementia. His entertainment now is mostly television watching and reading. He enjoys visitors and hopes to increase their quantity. Perhaps this blog will encourage old friends to show up more frequently. Otherwise he has very limited physical therapy, now needs a person to push his wheel chair, but enjoys improved meal quality. His daughter in New Jersey is a devoted and regular visitor as is his more local son and and one grandson. He can be very alert and up to real conversation, but sometimes quite subdued and sleep like. But he is fully aware of the outside world and its politics, sports results, and general public conditions. With these five long years of being disabled, he shows amazing courage and ability to enjoy the life that is his.

Donna Cook, LNHA, is the Director of Health Services where Mr. Otterbourg resides. Her employment there is rather recent, but she has a wide variety of experience which allows her to manage a special unit of 92 persons, all suffering with various levels of disability. Residents are separated between those who need only an assisted living environment from those requiring skilled nursing for 24 hours. The goal for the residents in this health facility is “person centered” care. You can imagine the challenge here, especially with most of the skilled nursing residents suffering with some level of dementia. The triangle area in North Carolina favors many facilities caring for older persons struggling to manage their aging lives. Ms. Cook told me that her health service at the Forest at Duke, while competing with all the others, is fortunate to have retained some care giving staff persons for 5, 10, or even 20 years. Certified nursing assistants have the professional designation of most of the staff, plus there are two physicians at the Forest at Duke, treating the general healthy population of several hundred and managing the health of residents under Ms. Cook’s overall management. Her’s is not the job of the faint hearted, for anyone in her position must realize that every resident has several relatives and/or friends with critical eyes and ears, watching and listening to the care being given their loved one. You can read some reviews of the quality of care at the Forest At Duke web site.

In 1865, a French physician, Jean-Martin Charcot, MD, through his research of at least one lost patient, identified amyotropic lateral sclerosis, ALS. By examining the neuronal tissue connecting from the brain to the spinal cord, Dr. Charcot reasoned that this scarred tissue was causing the individual to develop the symptoms that eventually led to his death. Moving ahead over 100 years into today’s work with ALS, Dr. Richard S. Bedlack is the Director of the Duke ALS Clinic and he and his team work with the patients and their families dealing with ALS. ALS is a motor neuron disease, often difficult to diagnose and therefore, tough to treat. An individual who develops some difficulty walking, breathing, or with certain limb cramps may have ALS, or may have something more treatable. Dr. Bedlack, who has been involved with 2000 ALS patients, has created ALS Untangled in which he has identified many sources of treatment from his team in ten countries. The life expectancy of ALS patients is 2-5 years, with some living for 10 years or more. There are only two actual medications available, and they can only offer temporary relief. With a disease so difficult to diagnose, there can be multiple treatments determined by the many physicians or healers seeking answers and perhaps ultimately a definite cure. Take a look at ALS Untangled and note the amazingly long and varied list of hopeful and varied treatments. ALS strikes someone every 90 minutes, usually older persons, and we have seen the slow and declining effect it has on the lives of the patients as well as the increasing demands placed on their intimate helpers.

Geezerbill knows many older friends and relatives living with one or more disabilities. For some, the suffering is modest, while others have certain levels of misery. The role for us who have avoided one of these difficulties is to offer our love, our continued support toward both the disabled persons and the care givers, and to pray for the health and comfort of all parties.

Born in small town in Ohio, high school in Lorain, Ohio, then College of Wooster, then US Army Counter Intelligence Corp. where I learned most about human relations among the friendly and otherwise. Followed by a career advising businesses and individuals as the types and costs of employee benefits and personal insurance. Now a radio interviewing host

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