You have got Parkinsons, see me in 6 weeks, by Emiley Cody

“Can’t the questions wait, at least until we are home with the rest of the family?” The deep furrow in his brow told me he was serious. Feeling slightly exasperated, I pocketed my pen and quietly folded the exercise book onto my lap. I then made a mental note not to corner Brenden with any heavy questions whilst driving. Yet, I couldn’t help but feel frustrated; essays don’t write themselves over night, and I still desperately needed to hear his perspective to give my story a sense of entirety. But, then again, what was I expecting? I was asking my boyfriend of three years to reach inside himself, to a place of extreme vulnerability and uncertainty, and to share something that he perhaps didn’t want to acknowledge. I mean, this wasn’t idle traffic chit-chat, this was a discussion of Parkinson’s disease and with that, the gradual deterioration of his beloved Poppy.

I first met Brendens’ grandfather through his stories, and my oh my, was Bob a character. He was the fast-talking rally car driver, who taught Brenden how to change the oil on his second-hand Daewoo Llanos. He was the problem-solving engineer, who fixed the air conditioning system, with nothing but a series of interconnecting cotton strings. He was the laid-back deep-throated chuckler, who introduced Brenden to the twisted humour of the Monty Pythons Show. And of course, much to his credit, he was the exhausted night shift worker; who transformed himself every morning, without a word of complaint, into a little boy’s jungle gym, frenzied rodeo bull, or soaring Boeing 747. He was a father figure, to put all other father figures to shame. Brenden’s Poppy was without fault. Now, I say “was” not to be cruel or insensitive, as he is still around, but to acknowledge that there are certain aspects of Brenden’s Poppy that I didn’t get to meet and that are missed by his grandson; “the old him, the funny him, the always there him.” Character traits that are changing due to the progressive, neurological disorder that we know to be Parkinsons.

In Parkinsons’ disease, nerve cells within the “substantia nigra” of the brain progressively degenerate. This causes the brain to produce less “dopamine”, which is an important chemical messenger (i.e. neurotransmitter), responsible for the bodies smooth and coordinated muscle movements. The symptoms of Parkinsons Disease are numerous, variable and highly subjective; and can be likened to “the luck of a person’s bingo card – not everyone gets legs eleven”. Parkinsons symptoms include, but are certainly not restricted to: resting tremors, rigidity (stiff muscles), bradykinesia (slow movements), freezing (sudden inability to move), masking (vacant facial expressions), stooped posture, constipation, shuffling gait, micrographia (small compressed handwriting), reduced volume of speech, fluctuating blood pressure, loss of smell, constipation, sun-downing (late-afternoon confusion and agitation), sleep disturbances (vivid dreams), apathy, fatigue, depression, Parkinsons dementia (impaired short-term memory), hallucinations, paranoia and delusions. At present, Brendens’ Poppy does not have all these symptoms; those absent are hallucinations, paranoia, depression, delusions, freezing, and resting tremors. With the latter often being mistakenly considered to be synonymous with Parkinsons Disease. However, I felt as though summarising this list could be potentially disingenuous and disrespectful of another individuals’ experience of Parkinsons; hence, all are included. Furthermore, I say “at present”, to acknowledge that often symptoms only develop after ~70% of the dopamine-producing neurons have degenerated; thus, more may arise.    

Approximately 80,000 Australians are thought to live with Parkinsons disease, but for the aforementioned reason, only one in five are diagnosed prior to 50 years old. For my boyfriend’s Poppy, his diagnosis came before his 63^rd birthday, in March of 2009. He had stopped swinging his right arm whilst walking. This he put down to “having grown use to avoiding the bulky tool bag that he often wore on his right hip”. However, unsatisfied with this response and nervous about a family history of strokes, his wife sought medical advice. A neurologist, “blunt as the rim of his glasses”, had Poppy walk back and forth across the sloped floor in his office, before slapping a script in his palm and announcing, “You have got Parkinsons Disease, see me in 6 weeks”. He gave no additional information or consolation that day. Only uncertainty, which is yet another unfortunate reality of Parkinsons, as there remains no definitive cause nor cure and certainly no definitive prognosis. After 47 years in the Aviation Industry, Poppy retired in late January of 2013.

Yet, Brendens Poppy remained undeterred, despite the disease progression, because that was his character. He was, and indeed remains, an optimist. “Always happy with what he has and never asking for anything more”. One afternoon, over Chinese take-away, Poppy told me the story of how he married his “high school sweetheart”, Wendy, in 1969. It was “the same year as the moon-landing”, and together they built their first home on the very outskirts of Sydney, in Engadine; at a time “well before the railway-tracks had even been laid”. Their bookcase consisted of “three recycled sheets of timber, that were suspended between two shoulder-height stacks of brick”; because this, as Poppy likes to reminisce, “was all an apprentice engineer at Qantas could afford”. In this way, Poppy’s recollection of long-term memories remains almost perfect. He even remembers having his photograph taken with his first-generation, “continental-orange” Toyota Corolla in 1969; at his Aunt Eleanor’s station, in Berembed.

However, it’s his short-term memory that is progressively deteriorating, due to the Parkinsons Dementia. This makes it increasingly difficult for him to focus on everyday tasks. Often, it is harmless, and even endearing. Like the way he will subconsciously reach for Wendy’s cup rather than his own; or how easily distracted he is by the television, and will happily pour hot water into a sugar bowl; or how he often puts cutlery in the bin and stores oven mitts in the saucepans; or how he insists on leaving that one photograph, of him and his first-generation Toyota Corolla, face down in the scanner, despite never having attempted to photocopy it. Wendy will remove the photograph, but somehow or another, it always finds its way back. I once watched him plate himself a pink-frosted finger bun, at a dinner party, before he decided aloud “No, I don’t think I’ll have two”, and returned the finger-bun back to the tray. He then seated himself down with an empty plate on his lap and wondered where his first finger-bun had gotten to? When this happened, Wendy said quietly “Oh, I think it rolled onto my plate” and gifted him her finger bun; where she would once have tried to “correct him”, she now accepts “meeting each day with no expectations”. Since having been diagnosed, Poppy has developed a variety of subtle nuances, that are often really quite charming and even comedic. However, it is important to acknowledge that some developing character traits have the potential to be dangerous, particularly if unsupervised.

For instance, Poppy often forgets to raise his feet when crossing over curbs or to look ahead for potential obstructions. This in addition to his shuffling gait, stooped posture and difficulty navigating sharp corners, makes him a high fall risk. In the hopes to combat this, Wendy has taken to strategically positioning air dryers around their house, to deter him from tripping over exposed power leads or attempting to navigate unsafe walkways. Furthermore, she has enlisted the help of a physiotherapist to teach him the proper technique of using a walker. However, Parkinsons dementia makes learning even the simplest procedures rather difficult. Therefore, as a precautionary measure, Poppy carries two personal Mobile Medical Alert Pendants (MePAC) with him at all times. One is attached via a wrist band and another via a lanyard. When activated, an operator will contact Poppy within 2 minutes and assess whether or not he needs medical attention.

Another difficulty is that Poppy often forgets if he has taken his medication; despite having two sets of alarms, a relatively straightforward Webster pack and constant verbal reminders from an often-irritated Wendy, bless her heart. Though, admittedly I don’t blame him, as his medication alone could keep a small pharmacy afloat. He takes five Stalevo a day, to manage bradykinesia and poor muscle control, and one Azilect with Souvenaid a day to prolong its efficacy. He takes Allegron and Paxam at night, to help alleviate vivid dreams and sleep disturbances, and a combination of Lactulose, Movicole and Coloxyl, to maintain healthy regular bowel movements. This is really important, because Poppy often doesn’t recognise if he is constipated, and if so, his system is unable to effectively absorb his medications. Therefore, this fine-tuned balance is religiously monitored by his wife Wendy, who like Brenden, is on her own journey with understanding Parkinsons Disease.

Interestingly, Wendy’s approach to my questions differed completely from Brenden’s. Where she was open, enthusiastic and often relieved to have someone to discuss their personal histories with, Brenden was often quiet and reserved. Not because he was heartless, but because his heart was so big, and he wore it on his sleeve for his Poppy. Acknowledging the loss of his Poppy, even the feint glimmers of his old self, was understandably too painful. At one point, I recall Brenden asking, “Why do you care about Poppy’s history, aren’t you writing about Parkinsons?”. To which I responded, “What is Parkinsons without the individual?”. Now, I don’t think I quite understood the significance of what I had said, until after writing this piece. Though, I feel Wendy was already there. This is not a comprehensive overview of Parkinsons Disease, nor could anyone ever provide such a thing. Parkinsons manifests itself in ways that are incredibly unique and individualised to the person, and their loved ones. I know this to be true, because what else could explain that slightly ethereal photograph always returning to the scanner. So, to answer his question, no, this is not a piece on Parkinsons. This is my poorly written means of getting to know Brenden’s Poppy and developing an understanding of the beautiful, kind-hearted man that I am greeted with today.