A little over two years ago I was diagnosed with Parkinson’s, and shortly thereafter joined thie Caregiver’s Forum on this Web site – for two reasons:
First, I thought it would provide me and my caretaker with valuable insight into the disease, its symptoms, treatments, and, most importantly, input from those who have assumed the role of caretaker.
Second, I wanted to offer something that is often missing from the information stream – the patient’s perspective. Both objectives have been fully realized. I now feel as though I am near the top of a mountain of information that should be shared with the caregivers whom I am committed to assist. I have reached the observation deck overlooking this mountain of information and hope my views can be shared in a useful way by our readers.
I found that those who first sign on the Forum more often than not, know little about the disease. Fortunately, they are guided by the more seasoned caregivers and patients who frequent the Forum. Reference materials are often provided. Personal experiences conveyed. Symptoms listed and illustrated including both graphic and occasionally humorous anecdotes. Treatment options are discussed in great detail, including an occasional barb directed at an institution, the medical community and the pharmaceutical people. Soon those “newbies” are part of the family of caregivers and are soon sharing their experiences.
As is the case with majestic mountains, I found the Forum caregivers to be simply beautiful people in every sense of that word. They come from all walks of life. They are loving, caring, compassionate people who may be spouses, children, grandchildren, in-laws, homemakers, providers, young, old, in good health and sometimes in bad health themselves. Some are well off. A few are reluctant to admit to tough times that often accompany the realities of this disease. A common trait among our caregivers is their desire to help others. That is where the beauty shines through.
In my view, the Forum discussions that have the greatest value are posts that start out by asking for specific answers: When do I take away the car keys? Why the sudden interest in gambling or pornography? Why is he (she) so stubborn? What are Stages? What are the differences between nursing homes, health care providers, hospital care, hospice care etc.? What should I do if the doctor says We may be in the early stages of dementia? The list of questions asked are too numerous to detail.
For those of our visitors who have either not yet joined in the Forum discussions or who may be reluctant to participate, I strongly urge you to join our group. You will be warmly welcomed and assured we are all here to help you in any possible way to carry this difficult burden. When you too, get to the observation deck level I would hope you will have shared my experiences.
Editor’s note: Bob corresponded on our Forum, using the screen name Bandido1. Sadly, he passed away on April 7, 2012. Bob’s loss is deeply felt by all of us who knew him. His contribution to the causes of the Parkinson community have had profound impact.
Diagnosed in 2006, Bob was a Parkinson’s patient from North Texas. He was a Korean War Navy Veteran, graduated from Temple University in 1959 with a B.A. in Political Science and worked for 40+ years in the Trust Administration and Wealth Management field. Bob retired in 2001 as Senior Vice President of his company’s Los Angeles Office.Although medical problems reduced activities to some of his charitable volunteer work, he kept himself busy working as a Parkinsons advocate. Bob worked with the Michael J. Fox Foundation, the Parkinson’s Alliance, the Parkinson’s Acton Network and with the Obama Administration’s Health & Human Services Department in advocating patient input to a proposed National Healthcare Information Technology Database.