As my husband’s illness progresses, his needs change, and my responses need to change too. When he was first diagnosed, he was working, driving, taking care of his daily needs without my help or interference. My only responsibility was to accompany him to his appointments. We both were aware of the illness, especially the tremors, but it wasn’t really impacting our lives. He was in early PD or stage 1 where his symptoms were mild and he was able to function well without assistance.

His tremors started on the left side but after a couple of years we noticed they were moving into his face and then his right side. His smile disappeared and his body became rigid. He was definitely in stage 2, still considered early PD, when my CarePartner duties began to increase. He needed some assistance dressing, speech and driving became more challenging. Not long after this he decided to stop working and most of the chores he had been doing around the house suddenly became my chores including yard and home maintenance. He chose to stop driving and didn’t leave the house unaccompanied. We were about 8 years into his diagnosis when he reached the mid-stage of PD, also referred to as Stage 3, where challenges are considered moderate.

His tremor and rigidity were debilitating and defined my duties as CarePartner. I found myself having to help him dress, cut his food, basically any activities that required small movements were beyond him. His speech had become soft and he struggled to find the right words so I often stepped in to help him communicate. I stopped working to provide 24/7 care and PD was the epicenter of our daily lives. It was at this point that I finally convinced him to discuss treatment options with his Neurologist who recommended Deep Brain Stimulation. While he will speak of the challenges having the surgery brought, I am thankful for the relief it brought to my role. We went from borderline stage 4, or advanced PD, to a level more in line with early stage 3, mild to moderate symptomology. He is back doing many of the things he was unable to do pre-surgery and that has lightened my load tremendously.

None of our medical team focus on the stage my husband is in, we simply discuss where we are and what we need to do better. I am available to him for whatever support he needs, but recognize that my role as CarePartner has its limits too. If, and when, he moves into the more severe stages of this illness we will have to look for additional help. I need to be able to still be his loving Partner, when the Care component becomes too much for me to handle.

More information on identifying the stages of PD can be found at 5 Stages of Parkinson‘s Disease (healthline.com) and MDS-Unified Parkinson’s Disease Rating Scale (MDS-UPDRS) (movementdisorders.org).