And then life took a different turn
His arms stopped swinging, then the vein in his right hand started to twitch, then the hand started to cramp while typing. It took a year of multiple visits to doctors, different ones, till he finally landed at the neurologist's door.
That evening my husband selected a movie he said we should watch together, the one with Anne Hathaway and Jesse Owens, 'Love and Other Drugs'. A beautiful love story about a pharma drugs salesman and a woman with young onset Parkinson's disease. At the end of the movie he told me gently that he had been diagnosed with Parkinson's. Since I didn't know much about the disease and his own symptoms were barely visible, I received the information with perhaps a touch of denial giving him a tight hug and telling him that we'll be alright.
Symptoms or side effects?
But as the disease progressed, his symptoms and the respective medication needed to control those symptoms increased exponentially, until just a few years later we were no longer able to tell if what he was suffering from, were the actual symptoms or the side effects of the medication. His hand trembled violently and incessantly and would worsen under stressful conditions.
He started having pain, which the doctors denied were PD symptoms, vivid action packed sci-fi dreams, in which he would end up thrashing and kicking about, not being able to put on his shirt or button it and lastly the exhaustion within just a few hours of waking up in the mornings, not being able to walk 20m without breaking out in sweat. Our life had certainly taken a different turn. We had dreamt of traveling the world in our retired years, of spending time in different countries, of adventure and fun, plans now put on the back burner.
Adapting to life as a Parkinson's caregiver
I was suddenly bestowed another title, 'caregiver'. But was I really one. PD patients often dislike the help being offered to them and definitely don't like asking for it, leading to previously non-existent clashes between us. He felt controlled and dictated to. I felt undervalued and misunderstood. Feelings which grew until I realized that I needed to take care of myself, urgently. I needed an outlet. He was very supportive when I joined a gym and a local choir, both giving me the much needed space during the day. I reconnected with old friends, and started paying more attention to developing my quilting business. I got there in time.
His understanding, love and support for my various activities, despite the debilitating nature of his disease have helped me to retain my modicum of sanity and provide him with the ever changing levels of care that he himself needs. It is a constant and dynamic process of understanding, evaluation and adaptation, necessary for caregivers.
Has it been difficult for you or a loved one to maintain hobbies?