I worked as a nurse, a nurse midwife-nurse practitioner and a clinical director in my first act. In that first act were the years that I had trained for and dreamed about serving women with reproductive health needs and helping to guide women through labor and delivery of their newborn babies and to help through many phases in their lives. Then I was diagnosed with Young Onset Parkinson’sDisease. I left my clinical work and now am an author, advocate and artist.
As an advocate for those living with Parkinson’s disease, I have found new ways to be of service. Recently I was honored to be with a friend who was having deep brain stimulation (DBS). She was to take the leap into the beyond and trust a surgeon to open and implant into her brain devices that send electrical impulses to help relieve the symptoms of this relentless disease. She consented to the surgery even though the exact mechanism of action remains unclear.
You see, my friend was diagnosed at barely 40 years of age. She has raised a family, been divorced, runs a household, advocates for those with PD and is out of options to treat her own debilitating symptoms. The medications used to treat her disease no longer work consistently. She, like me, earlier in her relationship with Parkinson’s, thought she would never need to resort tosomething as dire as brain surgery, yet here she is.
She picks a well-known and respected facility and trusts her surgeon. I choose to wait out the process in the new and lovely hospital. Comfortable in this clinical setting I wait and keep my mind busy on tasks to pass the time. When my thoughts fall to her face, her work and her heart I fee lthe inevitable worry. Will she come through the surgery? Will there be complications? Will her voice or memory be affected? Will she regret her choice? I hold vigil, trusting the process, the knowledge and skill of the surgeon and the renowned team that holds her future in their hands.
I know family and friends that have come through this process. Most recommend it because they have felt relief of symptoms and take less medication after the surgery. I also have friends that have not fared as well. When it comes my turn to weigh the options, I wonder what I will choose? I pray she will be one to recommend the process to me. I pray she will get some relief from this relentless disease.
The call finally comes, the surgeon reports all is well….it went as expected…. she is in recovery. Relief tip toes in, but I will not feel settled until I hear her voice and look into her conscious eyes. In the ICU I am greeted by knowledgeable and warm nursing staff. I can hear her before I see her, she is joking with the nurses. A surge of relief fills me.
Now the recovery. I am sent home to hold down the “fort”with her daughter and plan to return first thing in the morning.
I wake early and check in. The night has not gone well. Lots of post op nausea and vomiting and NO PD MEDICATIONS UNTIL LATE LAST NIGHT. WHAT???????
This renowned center ignored the absolute necessity of dosing medication on time for people with Parkinson’s. She went over 16 hours without any of her medication. Her lack of access to her medications causing severe and painful dystonia and freezing. How could I have left her and not been there to advocate? How could they have not had her medications on site? She was thorough in all her pre-op appointments, the grueling hours of evaluation at which her medications were reviewed over and over and documented in her medical record.
Parkinson’s Disease requires that we take our medications on time to prevent crippling symptoms. Symptoms that preclude our ability to walk,to think, to move. How could a center of excellence not stock the proper medication?
As a clinician, I am shocked.
As an advocate, I am horrified
As a patient, I am terrified.
If those who know the most about our disease and its progression do not take the necessary steps to assure that we are cared for in our most vulnerable state, who will?
My friend’s medications were in her bag near her bed. She was told not to take them and was not handed her bag. Because she was too frozen to move, she was unable to reach them herself.
Friends and advocates, we have much work to do! Even in thebest health care centers in the world we must insist that we have access to the medications that allow us to function, especially in the inpatient setting. We must demand better attention is paid to our needs to prevent needless suffering and complications.
My friend was discharged the day after surgery, and we managed her medications and recovery with attention to her needs for her PD medications and treatment for pain. It will take time for her to heal and to recover. She will rejoin the fight, but we must not stay silent.
We have a long way to go friends. Please join me in the workahead. If you are soon to be undergoing a hospital stay, have an advocate with you. Have your medications with you and be prepared to take them if they are not provided by the medical staff. Communicate directly with your providers about your medication dosing. Plan ahead.