It was a dark and stormy night, the blackest and longest of the year. An ill wind was blowing against me in the dark and I was feeling a little shaky, unsteady, off balance, and nervous as I began to travel along life’s Parkinson’s Highway in a 72 year old body that had suffered some wear and tear and seen some tough times but still had a lot of life in it although I had recently noticed uneasy hints and subtle signs that not everything was quite right. A ghostly cold full moon cast a dim light on the uncertain future that lay ahead of me.
Sheets of rain blackened the late night so I couldn’t see the dark and dreary road ahead. Intermittent lighting flashes briefly illuminated a lonely old crooked Gothic house set high on a hill which seemed to be held together only by the wisps of smoke and the thick fog that surrounded it. A weathered battered sign swung slowly from the gate. I could barely make out the name, Dr. Parkinson’s House of Medical Maladies, and under it a notice stating All Welcome, Be Careful, Watch Your Step and Balance. You Are On Shaky Ground, Tremors Ahead.
The momentary lightning flashes afforded me only brief glimpses of the possible troubled future that awaited me as the door slowly swung open and a deep resonant voice bid me to enter, all were welcome. My body began to shake as I slowly understood that I had not found shelter from the storm but with fear and misgiving realized that I had entered the domain of the human brain and was about to discover what happens when its neurons no longer produce dopamine. I had entered the Parkinson’s Zone.
The doctor, a neurologist who specializes in disorders of the nervous system and brain, explained that there were five rooms which he referred to as stages and based on my observable physical symptoms he would assign me to one for as long as I needed it though I might progress through the others in time.
Room1, or stage 1, welcomes those new to PD and is marked by mild symptoms on only one side of the body which do not interfere with the activities of daily living. Tremors, changes in posture, and difficulty walking may be present.
Stage 2 is still considered as early PD. Tremors and rigidity get worse and affect both sides of the body. Problems with posture and walking may increase. Daily tasks become more difficult and take longer to accomplish but the PWP can still live alone and care for them self.
Stage 3 is considered mid-stage and all PD symptoms may be present. Tremors may have advanced to the full body. Loss of balance and slowness of movements are present and falls are common. The PWP is still fully independent but symptoms significantly impair activities such as walking, dressing and eating.
Stage 4 the PWP cannot live alone. Physical symptoms are severe and limiting. The PWP may be able to stand without assistance but will usually need a walker or cane to move around. Help is necessary to accomplish the activities of daily living.
Stage 5 is the full Parkinson’s misery. The most advanced and debilitating stage. The PWP cannot get out of bed or up from a chair without help. Stiffness of the legs may make it impossible to stand or walk. The person requires a wheelchair or is bedridden. Around the clock assistance is needed for all activities.
Upon finishing the tour the doctor said he would take me to my room. I said no thank you the rooms are "lovely, dark and deep, But I have promises to keep, And miles to go before I sleep." Life is short and time passes too quickly so I repeated "And miles to go before I sleep" and quickly left and continued on with my life. Don’t worry too much about what your stage is. Assigning a number doesn’t make it better or worse. You know how you feel.
Additional information. The above stages are based only on Parkinson’s observable physical motor symptoms. It does not take into account the non motor symptoms such as depression, anxiety, fatigue, dystonia, cognitive difficulties, etc. Symptoms are progressive and tend to develop faster the older you are. Each PWP is unique. Not everyone gets all symptoms and symptoms change at different rates, in different order, and in different variations with each person. It may take years to progress from one stage to the next, some people skip stages, and some never progress to stage 5. A good doctor will customize treatment for each stage.
