Take back daddy's smile from Parkinson's disease!

My name is Sarah-Marie, the firstborn daughter of Petal and Renwick ‘Dean’ Ram, and I am a self-proclaimed daddy’s girl. This fundraiser is to pay for the cost of surgery for my dad! Daddy’s girls think their daddies are invincible; untouchable; perfect, and for a long time, my daddy seemed that way. While he didn’t commit to weight lifting like his brothers, daddy, with his self-identified ‘cool wave’ and charming broken tooth smile, has always been known to have an active lifestyle; whether it was during his involvement with Victory Heights cricket, going for runs through St. Michaels in his shockingly short run shorts, or smoothly swimming laps at the pool at the Centre of Excellence. This athleticism and passion for staying active are in stark contrast to daddy’s current battle with Parkinson’s disease.

Daddy was diagnosed with this neurodegenerative disorder in 2010 after first developing symptoms in 2008. Slowly, but steadily, daddy’s mobility and independence decreased. Many people associate Parkinson’s disease with shaking, but in addition to these tremors, the person can suffer from slowed movement (bradykinesia), rigid muscles, impaired posture and balance, loss of automatic movement, speech and writing changes, chewing and swallowing problems and challenges with mood. There is no cure, but sufferers can attempt to manage symptoms with ongoing medication. As daddy’s condition progressively deteriorated, it was further exacerbated in 2016 after a fall down the stairs at home resulted in the loss of full use of his dominant arm. Daddy became heavily dependent on those around him and was unable to attend to the simplest of tasks. He also experienced ‘facial masking’, or hypomimia, which is characterized by absent or reduced facial expressions due to loss of control of the muscles of the face and head. Sadly, we were no longer able to witness that smile we had grown to love. It was a fate that was difficult to accept, for those around him, and not least of all for him – a once active and athletic man, who lived life spontaneously and freely, limited to being in bed, having to live from medication dosage to dosage, to achieve any little relief from the stiffness and discomfort that took over.

We first heard about Deep Brain Stimulation (DBS) surgery while I was in college early in his diagnosis. It is a surgical technique where electrodes are implanted into parts of the brain and are connected to a small battery implanted in the chest. The device and electrodes painlessly stimulate specific areas in the brain that control movement and may help stop the movement-related symptoms of Parkinson’s. Eight years after this first encounter with DBS, after scraping and sacrificing, through loans, selling possessions and most importantly, the kindness of family and friends, we were able to gather the US$86,000 for daddy to be able to have this procedure done in New York. Almost immediately, Daddy regained much of his independence; he was able to walk down the aisle, dance and give speeches at two of his daughters’ weddings; could now help take care of the multitude of puppies that his last daughter brought into the family; he could more freely and comfortably visit friends and family both locally and abroad; and finally, that broken tooth smile returned; that smile that radiated warmth and playfulness.

I’ve heard him once refer to his surgery date of January 30, 2018, as his new birthday, as that was the day he was given a new lease on life. Ironically, it was on his actual birthday four and half years later on November 14, 2022, that this lease expired. The battery implanted in his chest shut down, and daddy regressed to his pre-surgery state. Even more devastatingly, due to the further neurological deterioration that had occurred since the surgery, daddy’s symptoms were startlingly worse. He has resumed his regime of medication that offers him short and fleeting moments of comfort, but otherwise, daddy is involved in a relentless battle with the symptoms we once thought were a distant memory, that has now in fact worsened and intensified.

We are hoping to raise the funds necessary to have surgery to replace the battery. The cost is $65,000 U.S. While there was an expectation that surgery would have been required to eventually replace the battery in his chest, the cost of the surgery was significantly more than anticipated. Particularly for retirees like my parents, with no insurance, who are currently still navigating the debt incurred from the previous surgery in 2018. We are eternally grateful to have been able to have that first surgery, and we have borne witness to the power it had to restore to daddy the quality of living that he deserves. We are however out of our depth financially and are appealing for the support of the wider community to help bring daddy’s smile back.