Education and Awareness

Many inquiries that I receive are from spouses or caregivers needing additional information to help their loved one that has Spinal Bulbar Muscular Atrophy (aka Kennedy's Disease). Occasionally, I receive an email from a facility that is caring for a person with Kennedy's Disease. I am most appreciative of these caregivers because they are taking the time to research and understand what a person is going through that has the defective gene.

This summer I received such an email. A caregiver in a nursing home asked a series of questions about how Kennedy's Disease affects a person. We exchanged several emails. Her final email was interesting because she commented that many of the staff felt the person with Kennedy's Disease was 'faking it' (my term) and they were frustrated with the patient. After reading my responses and looking through the Kennedy's Disease Association web site, she now better understood the physical and emotional issues a person with Kennedy's Disease goes through. Two specific areas that frustrated many of the caregivers were: (1) the almost daily comments from the patient concerning muscle pain (constant aching), and (2) the frustration the patient exhibited with not being able to perform simple tasks. The caregivers could not understand why the patient would continually try to do something that he just could not do. One example was walking … and as a result occasionally falling.

As I mentioned, fortunately she took the time to do some research including contacting the Kennedy's Disease Association to help her understand more about the disease. In her last email, she commented she now was taking on the task of educating the rest of the staff about Kennedy's Disease.

This incident makes me wonder about others with Kennedy's Disease that might be in a nursing home or facility where the staff is unaware of the effects of the disease on the patient. It amplified the need to constantly educate others concerning Kennedy's Disease ... especially those in charge of your care (in a hospital, nursing home, and even your doctor's staff).

From personal experience, I know that we have to be the caretakers of the disease. When I broke my tibia and fibula in a fall a few years ago, the doctors were ready to wheel me into the operating room to repair the leg. I told my doctor that the anesthesiologist needed to be aware of my condition and only use anesthesia that was known to be safe for someone with my condition. I also instructed the doctor about keeping me warm because hypothermia is another concern for those of us with the disease. I had my wife bring a file on the surgical concerns of operating on someone with the disease to inform the doctors of known issues. If I had not said, "Time Out," the surgery might have caused me more harm than good.

I now carry a medical card in my car and wallet. It explains that I have Kennedy's Disease as well as concerns that need to be addressed before administering anesthesia and operating on me. I highly recommend that anyone with this condition print the information found on the Kennedy's Disease Association website regarding anesthesia and give a copy to your doctor.

The Boy Scout's motto is "Be Prepared." Are you?