When facing life with a chronic, progressive disease such as Parkinson’s disease (PD), how you choose to spend your time takes on even greater importance. This is what I learned when I was diagnosed with young onset PD in 2001, and afterwards while striving to ‘maintain’ my quality of life.
So although I had struggled with pain in my right knee for three or four years, because of my Parkinson’s, I never considered surgery as an option. Like many people with Parkinson’s, I have a ‘good’ side and a ‘bad’ side, with the latter being more severely by my Parkinson’s symptoms. For me, my right side was my ‘good’ side’ and despite my right knee pain I couldn’t risk losing that! I needed it to stay active, for my family, my friends and my advocacy in the Parkinson’s community.
But by the summer of 2013, I had very limited mobility due to the combination of my knee and the Parkinson’s. I reluctantly scheduled surgery for October. As the date for my upcoming knee replacement surgery approached, my anxiety level grew. I knew that this surgery was done routinely, trusted my surgeon implicitly and had high expectations for a positive outcome.
So why the apprehension about something that is supposed to improve a patient's physical function and relieve pain that interferes with daily living? It wasn’t the thought of additional pain that concerned me, but it was the worry of how the surgery would affect my Parkinson’s.
In 12 years living with Parkinson’s, I had learned a lot about the disease, and how to manage it. I had gotten very involved in the community, including as an advisory council member for the Parkinson’s Disease Foundation. By this point in time, I knew that sometimes surgery can be a risk for people with Parkinson’s. This is in part because our understanding of its complicated symptoms and the meticulous medications schedules it requires, are relatively recent. For me, having just two years ago undergone deep brain stimulations (DBS), I now had that added to my list of concerns about surgical procedures. (I have an electrode surgically implanted into part of the brain and a battery pack that is implanted in the chest area sends finely controlled electrical signals to the electrode via a wire placed under the skin).
The day arrived for my Joint Replacement Camp at Deaconess Gateway and although I was proactive in preparing for this appointment, my anxiety level was still high. As my anxiety worsened my PD symptoms worsened which in turn worsened my anxiety. It was a vicious cycle!
I couldn’t keep these thoughts from my mind. “What if I leave the hospital with a new knee but a decline in my Parkinson’s”? “What if they try to do physical therapy with me before my meds have time to kick in?” “Will the Anesthesiologist be sensitive to my concerns about intubation making my speech problems worsen? “Would he know that general anesthesia can cause people with PD to become temporarily confused and, in some cases, to experience hallucinations?” “Was the staff aware that some medications given during surgery can cause confusion or worsen symptoms in PD and that some medications further deplete the brain of dopamine (the chemical messenger that is lacking in PD)? By the time I arrived at Deaconess Gateway, I was an emotional basket case.
A very considerate and competent staff took me through all the necessary steps. I took extra time to explain my concerns and they were duly noted. I know I was wearing my emotions on my sleeve and it must have shown to the woman who came up and introduced herself as Angela Tiguida, an RN in the Pre-Admission Testing. I’m sure she was busy, but she was relaxed and allowed me to talk as long as I needed. Angela took me into her work area and listened to all of my questions and concerns. She responded to these concerns with compassion. She asked pertinent questions while taking copious notes. After getting all of the information into my file, she introduced me to coworkers who I might see the morning of surgery. She then took me to the 5th floor, introduced me to several of the staff that would be working with me after surgery, and requested that they give me a tour of the unit. Upon thanking Angela her response was, “That’s why I’m a nurse.”
When the day of my surgery arrived, I found that Angela had done as she promised; everyone was aware of my needs and took exceptional care of me. Would this have happed without Angela’s intervention? Maybe, maybe not. What I do know is that Angela affirmed my feelings and responded to them in a way that not only relieved my emotional anguish, but improved my care. It was obvious that her work was her mission. She not only took the extra step she took the extra mile. Every word she spoke and every action she did spoke to her commitment to her patients.
Angela’s commitment meant that I could focus on my recovery and on making my ‘good’ side even better. And feeling better means that I can spend my time doing what’s important, spending time with family and advancing Parkinson’s advocacy and education so my children do not have to face this disease.
I commend Deaconess Gateway for its exceptional staff and in particular for Angela, for helping me to spend my time well.
To learn more about the special considerations for people who live with Parkinson’s who visit the hospital, visit the Parkinson's Foundation website.