I have had a fantastic, exciting, and fulfilling life, and I hope it can continue. But at the age of 71 I now have something the doctors call Parkinson's Plus. They haven't figured out what the "plus" is, but I have always done everything in a big way.
The disease sucks, but there is a wonderful side effect - the excellent care I receive from "Capital Caring," a hospice and palliative care organization in the Greater Washington, D.C. area. One of their slogans is to ease pain and suffering for people like me "who have fewer tomorrows than yesterdays." Those yesterdays have been fantastic and I intend to make the most of the tomorrows God grants to me.
I am an outpatient of Capital Caring, which means I can stay in my beloved home at Lake Barcroft, Virginia, and can work from home, or cover news events in Washington when my supportive husband Charles can drive me (I have been a reporter since 1968 and believe I am now the most senior White House reporter). The Hospice people come to me, and they are kind and caring.
I don't have to put on a strong face with them. I can talk honestly about life, death, pain, and pain management. It is not the same with people in the "normal world" who are uncomfortable with such topics and sad to see us struggling to talk and walk.
The caregivers come in droves. Hospice sends doctors, nurses, social workers, chaplains, and case workers to coordinate my care. A truly wonderful lady, Regina Gerald, comes twice a week to scrub my hair and body. I am not used to such attention, and have never been so clean!
In addition to the visitors, I get phone calls each day from their TeleCaring service. A kind, gentle lady asks if I am doing ok, or need any more equipment or medicine. The calls are from a real person - not a robo call. They are patient with me, even when my voice is so weak they can barely hear me. But they seem touched when I ask them how they are doing!
Capital Caring has moved in a hospital bed and a special toilet. Those of us with movement disorders know it is a major challenge to get in and out of bed, use the toilet, or get dressed or undressed. My cat must think I am playing a weird game.
I recently attended the Capital Caring Gala, an annual fundraiser ball the organization hosts, at the Ritz Carlton in Tysons Corner, Virginia. I was invited by the Communications Manager, a young man named Jason Parsons, and Capital Caring's CEO, Malene Davis.(Jason was a helpful contributor to this article). It was a grand affair, and it was great to see old friends and make new ones. It was so good to see again Bob Dole, who was honored at the gala, and I was surprised and delighted to learn that Senator Dole had authored the Hospice benefit into Medicare in 1982. It was so wonderful to meet such caring, glamorous people! Capital Caring's gala raises funds for the nearly $3 million the organization provides in charity care each and every year.
"Hospice is about making the most of every moment, and focusing on what matters most to patients and their families," said Davis, "It isn't about life ending, but rather about having your symptoms managed, your pain under control, so you can make the best of your time with friends and family."
The Gala dinner began a bagpipe performance by Dr. Cameron Muir (in formal Scottish tartan and kilts) and concluded with a wonderful music performance by Dr. Perry G. Fine and the Blue Healers. These musical docs are among the nation's foremost pain management physicians and works closely with Capital Caring - and they play well!
"Hospice care is of, by, and for the community - it's about honoring legacies and enabling families to make the most of their time together," said Parsons, "The gala is one example of the outpouring of community support to help Capital Caring remain on the leading edge of providing high-quality care for those with advanced illness."
I don't know what the future holds - no one does. I will try to keep fighting this disease - I have a lot to live for. But I am aware there is no known cure for Parkinson's at this time. I am comforted to know Capital Caring will be with me and others in this final journey.