June Issacson Kailes: I repeatedly, and sadly unsuccessfully, advocated with others with CP to have UCP and the Cerebral Palsy Foundation devote time and resources to the issue. After devoting many frustrating years to this issue I moved on to focusing on disability-related health care issues. For a while I did lots of articles on aging with disability (See http://www.jik.com/h-pubs.html) such as Aging with a Disability: Another Advocacy Priority, Midlife Cripdom: Getting Fewer Miles per Gallon? Be a Savvy Health Care Consumer Your Life May Depend on It!, and Aging with Disability – Good News and Bad News.
I just looked at some aging with disability content on my website and was dismayed at the number of broken links related to aging with disability government projects that no longer exist. I was, however, pleasantly surprised to learn of some renewed interest in the topic while at a one-day American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) meeting in Chicago. So thanks for offering the opportunity to rekindle some fire, traction and passion for these issues.
Today most of my work is focused on focuses on building actionable disability competencies in the worlds of health care and emergency management to insure people with disabilities and others with access and functional needs are integrated and included in services, processes, procedures, protocols, policies and training. I’ve had a consulting practice for many decades and work as a trainer, author and policy analyst. I’m also the Associate Director Center for Disability and Health Policy at Western University of Health Sciences, in Pomona, California. I am married to Bob Kailes live in Los Angeles. More at http://www.jik.com
About my CP:
Ataxic form of cerebral palsy.
- Born premature, walked late probably around age three, wore below the knee braces for two brief periods during pre-school and in grade school to try and mitigate my knees from hyperextending, but effort was discontinued probably because they had no effect.
- 1950-1960s Personal physical best probably in grade school and high school where I walked independently. I always felt safer walking hanging on to someone.
- Walking and balance has deteriorated over many decades beginning in the late 1970s.
- In 1990 when walking independently became slower and more difficult, especially when carrying items, I started using scooter for travel and work related activities involving lots of walking and carrying suitcases, training manuals, laptops etc. I am increasingly more dependent on my scooter for community mobility as I no longer feel safe walking in the independently community.
- 2005 began to also use scooter increasingly for pleasure travel
- Up until 1990 my GMFCS level was II and it is now level IV.
- I exercise and stretch regularly to prevent becoming the “tin man.”
- I lived with chronic back pain, although much improved, over the last three years with weekly private Pilates sessions [ recommended by a local physiatrist] as well as doing some different back exercises.
- I try and ride my recumbent trike twice a week, averaging 10—14 miles a ride and get weight bearing exercise by walking on a treadmill.