1. How has your relationship with your partner changed since DBS?
We are closer in terms of more conversation, sharing the cooking, eating out, walking our dog, going on cruises, attending shows and movies together and going out with friends.
We have more patience and understanding toward each other.
We are less active in terms of outdoor activities such as biking, hiking and cross-country skiing.
We are less active as a couple and do less entertaining at home with friends.
We have developed more patience and understanding of neurology, neurosurgery and neurosciences. Programming sessions of the DBS stimulator has been particularly challenging, when much of it seems to be trial and error and makes us wonder if treating PD and DBS is really “rocket science.”
I have developed patience and understanding when dealing with Kate’s changes in mood, lack of energy, upset stomach, constipation, stiffness, lack of range of affect, low voice volume/tone, dyskinesia and irregular sleeping and eating patterns.
I have developed more compassion and empathy for what Kate is experiencing with PD and DBS. I am grateful that Kate’s PD isn’t a lot worse for her.
2. What are the best things that have happened to you, your partner and your relationship since DBS?
We’ve become closer and more supportive of each other through the entire PD/DBS experience.
We have become more empathetic toward others who are experiencing “worse” symptoms.
We are more appreciative of how well Kate is doing (e.g., as compared to the symptoms of others with PD and DBS).
I have developed more compassion for Kate’s trials and tribulations with PD and DBS, including leaving her career early (which she loved!), her ups and downs with fluctuations of meds and programming, her commitment to those with PD and DBS through her volunteer work with the DBS support group and assisting patients as a volunteer as a volunteer DBS patient and family liaison at the hospital, and creating an award-winning blog. Amazing accomplishments for anyone, and particularly significant for a person with PD for 17 years and DBS for 8 years.
Opening the door to PD and DBS has presented Kate with new opportunities she never would have experienced without PD and DBS.
We decided to take this PD/DBS ride together, for better or for worse!
3. What are the worst things that happened to you, your partner, and your relationship since DBS?
“Downsizing” our previously active social and recreational activities has been difficult and has resulted in a less satisfying lifestyle. Becoming homebodies has been an adjustment.
Kate’s voice deterioration has been an on-going source of frustration, but we are working on it and making headway (adapting).
It has been more of a challenge for me to find the time to do some of the things that I enjoy such as bike-riding, fly-fishing, and walking with weights.
The challenge to Kate is maintaining her meaningful activities such as her volunteer work, writing her internationally recognized blog, writing and completing her book, maintaining contact with friends either in person or by email, taking Broadway dancing classes and performing with the Rockyettes.
4.What are your biggest worries about the future?
We worry a lot.
We worry about each of us losing our independence with the progression of PD and Kate’s increase in symptoms.
We worry about Kate losing her voice and not being able to communicate verbally.
We worry about Kate losing her mobility and not being able to go places on her own if and when she needs to stop driving.
We worry about if and when Kate may need the assistance of a wheelchair.
We worry about Kate not being able to maintain her meaningful activities, which could result in inactivity, withdrawal and depression.
We worry that Kate’s meds and her DBS will stop working with the progression of the disease.
We worry about the cost and availability of quality health care after I retire.
I worry about maintaining my own patience and health as a care partner and being able to provide support to Kate.
5. What advice would you give couples considering DBS?
Talk to each other.
Talk to people who have experienced DBS.
Do research. Read blogs, books and articles.
Make an informed decision as a couple. It is NOT one person’s decision!
Weigh out in writing and through discussions the pros vs. cons of DBS surgery.
Develop realistic expectations for the results of DBS and discuss these expectations with your DBS team to determine if they are in synch with yours.
6. How have you been able to avoid burnout in your role as care partner?
I have been able to enjoy the passions in my life, including biking, fly-fishing, dog-walking, in addition to spending leisure time with Kate.
My work can get intense at times (after 40 years as a psychotherapist), so I need time for fun away from work as well as time with Kate and away from her. Of utmost importance is to maintain balance between couple and individual time and home vs. work.
The ongoing challenge for me is to continue to make new friends and enjoy more sociable activities.
7. Is there anything else that you would like to say?
To protect yourself emotionally, I would encourage DBS participants to keep expectations of success to a minimum—a task which is easier said than done! I believe DBS surgery is worth the risk, no matter how minimal the success. I think if the DBS surgery can improve your life with PD even one iota, it is worth the risk.
DBS is not a cure for PD as the disease continues to progress
despite the surgery.
It is easier to “bear the load” of PD and DBS as a couple than as a single person. Your support network and resources are critical to maintaining your life satisfaction and your sanity.
Tom Kelsall is the husband of Kate Kelsall. Tom and Kate celebrate their 39th wedding anniversary next month.