The Shame of Having Parkinson's Disease
Last updated: April 2023
When Posy was told by the neurologist that he thought she had Parkinson’s disease (PD), she was not unduly concerned.
She had spent 20 years having tests and treatment for many issues that were usually declared not to be serious. Therefore, she was expecting be told, "You do not have Parkinson’s." Considering that 2 doctors had just reassured Posy that she did not present with Parkinson’s and did not need a referral to a neurologist, Posy’s complacency is perhaps understandable.
Diagnosed with young-onset Parkinson's
"You have a small essential tremor, but nothing suggests PD." Phew! Posy was beginning to wonder if the doctors had secretly branded her a hypochondriac as she had presented with migraines, carpal tunnel, trigger finger, tendonitis, frozen shoulder, sciatica, tennis elbow, pneumonia, digestive problems, skin cancer, depression, anxiety, fatigue, stiffness, knee degeneration and more.
The tremor, however, was becoming more noticeable. Posy asked to be referred to a private neurologist. This specialist wanted to confirm his suspicions by ordering a DatScan. He called Posy in to tell her the results. Posy had not given this appointment much thought. "Oh," exclaimed the neurologist, "I expected you to bring someone with you! I am afraid you do have young-onset Parkinson’s."
Unaware that a very middle-aged Posy was reeling from an unintended compliment, he passed her an unnecessary box of tissues and outlined possible treatment plans. He did stress that the outcome was different for everyone: "It may be 10 years before you have any real symptoms." Posy had to rush to her knee appointment, so she still did not really have time to absorb and react to the implications of the diagnosis.
The shock sets in
Once she finished at the knee clinic, she had a 20-minute gap before she had to collect her father from the hospital, so she called her husband at work. He had researched the ramifications of Parkinson’s and was shocked and very upset. From that moment, Posy felt ashamed.
Ashamed of her physical weakness, of being a burden, of the pity she would encounter, of the plethora of pills she would take, of being a victim, of bringing this on herself ... and of having an elderly man’s disease.
Adjusting to a different self-image
There is nothing glamorous about PD and Posy wasn’t used to admitting to such a frailty. She tried to reconcile her pupils' current image of their favorite music teacher driving her pretty lipstick-red convertible sports car, her blonde locks flying in the wind, with a vision of an unwashed, greasy-haired, demented invalid in a wheelchair.
She hated the thought of people asking each other, "Have you heard about poor Posy? It’s such a shame!" UGH! It was too much to process!
Trust in your loved ones
For the first weeks, Posy did not want anyone to know. Her husband was a true gem and respected Posy’s wishes of telling no one, while doing everything he could to make her feel she was still the same girl he married, even though he probably needed support.
Then Posy told her extremely medically-literate sister, who has whole-heartedly supported Posy ever since. She suggests relevant TV programs and webinars, reports developments in PD research, organizes groups to support Posy playing piano at Parkinson’s charity galas. Most importantly, she insists it is ok "not to be ok."
Gradually, Posy "came out" to her daughter and other family members. Sadly, although Posy's beloved father would have made her "all better" by reminding her, "We are strong. You will be all right," she knew he would worry himself to death if he knew. He died later that year, still unaware.
Real and imagined reactions
Posy’s in-laws are kind, generous people, but naturally, their first instinct on hearing the news was to worry about their son's future: Would he have to care for an invalid?
OMG! Would Posy be a terrible burden? Should she sort of accidentally-on-purpose swallow too many pills to avoid this unbearable outcome? This was guilt on a whole new level. The words "Burden, burden, BURDEN" still batter her mind through long, sleepless nights.
Posy’s friends also deserved to know the truth. So, taking a deep breath, she revealed her illness to them, one by one. Without exception, each one cried! Posy felt cosseted in love.
To this day, these fantastic friends, plus her new ones, have shown tremendous kindness in every way. Without asking, they carry her bags, make allowances for her needing to rest, bring cakes and enquire constantly about her well-being. They invite her out, automatically assuming they will drive, all the while exclaiming, "You look amazing!" "It is hard to believe you have Parkinson’s!"
Sharing the news with the community
Thus encouraged, Posy started to confess her ailment to her community, especially at church. It was a relief to explain her inability to take on too many events in a week, or to attend events scheduled before 11:00 AM.In fact, Posy found it easier to admit to having PD than to seem to lack enthusiasm! When Posy first needed to sit down during a rehearsal, a few other singers were relieved to follow suit!
Posy still hates to have an illness that is associated with aging ungracefully, but she is overwhelmingly grateful for people’s kindness.
Be loud, even if not exactly proud
Soon, instead of dreading having to admit her unattractive disease to new acquaintances, Posy began introducing herself as a person With Parkinson's. Better to forewarn people before the symptoms become a nuisance and cause her to change or cancel plans.
The light really began to shine when others "admitted" quietly that they, too, were sufferers. They were glad to open up, especially as Posy tried to encourage them to wear the badge of PD with, if not pride, then, at least, acceptance and dignity.
No longer was Posy just a victim. She was becoming a warrior! Posy hopes that if you feel that same shame and humiliation that she experienced, you will soon realize that accepting the diagnosis is cathartic and proclamation is empowering!
On average, how many times per month do you (or your caregiver) go to the pharmacy?
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