Posted by WellSpouse (@janwsa) · Mon, Aug 4 at 10:41am CDT
WellSpouse - Patient/Caregiver Scholarship 2014
I have been a spousal caregiver since 1999, when my husband was diagnosed with Young Onset Parkinson's Disease at age 48. I was working full-time and our son was 14 when my husband had to go on disability in 2003.
Not only did we lose my husband’s income, I lost my partner in many ways. He could no longer help me do the yard work and could only do limited household chores. The medications caused side effects like paranoia and involuntary movements, called dyskinesia, that were difficult to cope with. Eventually, his dyskinesia was so bad that he could not eat comfortably, sleep comfortably, sit comfortably, read or drive. He weighed 118 pounds. Friends and acquaintances were worried that he was dying. His doctor then suggested that Allen have Deep Brain Stimulation surgery, or DBS. We decided to move forward with the extensive evaluation process to ensure that he would be a viable candidate for the surgery. DBS surgery inserts wires into the brain and connects them to stimulators implanted in the patient’s chest. Voltage is then applied which stimulates the brain. Thankfully, Allen’s surgery was a tremendous success, and he again has a good quality of life.
Over the years we have become active with several Parkinson’s Disease organizations in order to feel more in control of the disease and help seek a cure. Allen and I sit on the Community Outreach Board of the Emory University-Udall Parkinson’s Research Center and the planning committee for the National Parkinsons Foundation Moving Day Atlanta, which will be held November 1 at Centennial Olympic Park.
To find support for myself, I searched online and found the Well Spouse®Association, a national 501(c)3 nonprofit that provides peer support to those caring for a chronically ill or disabled spouse or partner. I attended my first national conference in 2005 or 2006, and started an Atlanta support group shortly afterward.
The first few years the meetings often consisted of just me and one or two other people. But we all hung in there, and now our meetings draw ten to fifteen caregivers. I am also co-president of the organization along with Dorothy Saunders of Fairfax, Virginia, whose husband is a quadriplegic. We have a Facebook page (https://www.facebook.com/WellSpouseAssociation) and best of all, a closed Facebook group, Spousal Caregivers - Well Spouse Association, with nearly 500 members, that allows people to vent freely and safely to others who understand what they’re going through.
As for me, I have also incorporated my caregiving into my consulting business, January Consulting (www.januaryconsulting.com). I combine my love of market research with my devotion to spousal caregivers and finding a cure for Parkinson’s through providing research services to several nonprofits. For instance, last year I conducted a study of Parkinson's spousal caregivers and presented the results via poster display at the World Parkinson's Congress in Montreal in October 2013.
If you are a spousal caregiver and need support, or if you’d like to help, please visit the Well Spouse website at http://www.wellspouse.org.
Questions about the contest or the voting process? Click here.