When we met Katherine, she had been living with Parkinson’s disease for 10 years. With the productive time in her day decreasing steadily, Katherine was interested in investigating Deep Brain Stimulation Surgery (DBS) as a way to improve her function by decreasing the side effects of the medicines necessary to manage her Parkinson’s.
Living in close proximity to several major medical centers in Boston, Katherine knew that she had her pick of hospitals qualified to perform DBS. But she was struggling with how to determine which program would be the best fit.
With help from Healthassist, Katherine created a list of specific objective criteria (number of DBS procedures done each year; success rates; complication rates) as well as subjective items she deemed equally important. Using this list, she was able to rule out several programs that didn’t meet her criteria, and ultimately was able to select a program that included a full team of neurologists, nurses, physical therapists and other specialists that could communicate effectively and compassionately to meet her needs for the rest of her life.
With some encouragement, Katherine attended a support group sponsored by the American Parkinson’s Disease Association (APDA) and met other people with the same goals – of living well with Parkinson’s disease. She also realized that individuals are willing to share their personal experiences if asked.
The DBS procedure now behind her, Katherine tells us that with Healthassist‘s help, she was well prepared both physically and emotionally to undergo brain surgery, and all went smoothly. She went home 48 hours after the procedure, and received follow-up care through a combination of services from the local visiting nurse agency and a private homecare company. A few weeks later, she began the process of stimulator adjustments that allowed her to slowly decrease the amount of Parkinson’s medication she takes on a daily basis.
Through the process of evaluating DBS programs, Katherine discovered that as an empowered healthcare consumer, she was in the position to evaluate potential partners in her care, just as the physicians were evaluating her as a viable DBS candidate.
As a result of the DBS procedure and follow up care, Katherine describes the productive time in her day as having increased from 40% to 65% and, so far, she is very pleased by the outcome. And she knows things could get even better if she continues to keep herself as physically and emotionally healthy as possible.
She also knows that she has to continue be an active participant in the healthcare process (with Healthassist continuing to support her along the way).
To find out more about Katherine’s experience, listen to an interview with Katherine on the Healthassist podcast.
How Healthassist worked with Katherine
When we started working with Katherine, she needed assistance realizing that she had choices. As the center of her healthcare team, she had to identify her specific needs and make them known to the professionals that surround her.
Healthassist offered that assistance by the following services:
- Researching the local DBS programs
- Gathering all her medical records and diagnostic testing results and preparing a packet of required information for each program
- Helping prepare an agenda for all appointments that included a specific set of questions that she asked each team so she could compare responses
- Attending appointments with her to fulfill the role of another set of listening ears, a silent scribe and asking the questions Katherine might not think to ask
- Preparing for her hospitalization and discharge, communicating with the physician following surgery and communicating with the discharge planning team
- Helping Katherine hire caregivers for private homecare services
- Assisting with the development of tracking tools to help Katherine choose the best DBS program for her and to monitor all the information necessary to continuously share with her DBS team
Become an empowered healthcare consumer
Katherine offers these tips to consider when seeking healthcare:
- Identify all the options available to you
- Be sure to include your personal preferences
- Find other people with similar healthcare issues and ask them to share their experiences
- Remember that you are at the center of the equation and an equal member of your healthcare team