woman newly diagnosed with parkinson's is being hugged by a speech bubble

Kind, Gentle, Whispers: A Message to My Newly Diagnosed Self

Last updated: September 2022

When I was first diagnosed with Parkinson’s disease, at the age of 28, I did the typical and oh so common thing ... and yup, I Googled it. The millions and millions of pages of search results that pinged up in 0.53234 seconds seemed both overwhelming and terrifying.

Useless information

They were also not particularly helpful. The information was regurgitated, textbook speak, which seemed to emphasize how Parkinson’s disease predominantly affected people aged 55 and above; and how it was degenerative disease, which meant this disease would not kill me ... but instead would make me a drooling, depressed, and dependent vegetable in a wheelchair in 10-20 years. Whoop-dee-do for me.

The WWW

The more I dared to read on this wicked world web, the worse I felt. If I stumbled across forums and people’s real day to day experiences of living with Parkinson’s disease, they did very little to allay my anxieties.

These forums merely projected a tone of doom and gloom and endless despair. No one seemed to be living well or positively with Parkinson’s. Or, if they were, they were doing so secretly and choosing not to share it.

Despair and depression

I remember noticing a clear correlation between my mood and my internet browsing. Whenever, I opened the internet browser to feel less alone, seek community and find comfort, reassurance and solace with my diagnosis, I very often closed the browser feeling despondent, dejected, and demoralized.

I was engulfed by a cloud of despair and depression. Was this an accurate face of Parkinson’s disease? Was my life over before it had begun? Was it just an endless sea of misery and decline now?

Lessons to my self

I really wish I had had someone older and wiser to give me reassurance in those early days, months, and years. Someone who could have shared some much needed sage words of wisdom. Words that were based on solid experience, but would let me know that a diagnosis of Parkinson's did not mark the end of my existence, it just indicated a different type of existence.

These are some of the things I wish my newly diagnosed self had been told or had had access to.

Guilt and shame

When you are first diagnosed, you will grapple with a torrent of terrible thoughts and emotions. This is normal and to be expected. You will particularly and inevitably be overcome by feelings of guilt and shame. Guilt for having dodgy, deficient, and defunct dopamine receptors and shame for letting your children down by being a disabled parent.

But, with experience and wisdom, you will recognize it is natural to feel these feelings. Your first therapist, after diagnosis, will astutely point out to you that you are having a completely "normal" and quintessentially typical textbook response to this gargantuan life-altering diagnosis.

She will draw parallels between the mess of emotions that you are experiencing and the 5 stages of grief according to Kubler-Ross. This will prove to be an enormous relief to you ... a quasi-epiphany of sorts. You will no longer feel like you are losing your mind, but instead you are having a completely normal and human reaction.

Stop mentally chastising yourself. You are not crazy. But, rather, congratulations, 100 percent normal. These emotions are meant to be felt, acknowledged, and recognized. Easier said, than done. I know, I know. But, trust me, should you seek to ignore them, squat them, or suppress them, they will just come back angrier and more gnarly. Then they will be even harder to deal with.

Therapy can help

Parkinson’s disease may initially appear to affect your physical abilities. But, there is a whole implicit, often ignored non-motor side to Parkinson’s. Similarly, there is a dichotomous, inter-dependence between your mind and body. It is therefore imperative for you to take extra care in preserving the wellbeing of your thoughts and mind.

Your mental state can make you or break you, it can build you up (during particularly tricky times), or it can tear you down further. Therefore, you need to nourish it with healthy, positive thoughts. This is were some type of therapy may be useful. There is no shame in seeking help from a plethora of external agencies.

This is not meant to be solitary battle you embark on. Seeking and cultivating a space safe, which affords you the opportunity to tap into some sort of nonjudgemental cathartic release, will prove very beneficial. It will enable you to excavate the sub-conscious mental sludge that convolutes and contaminates your neural pathways.

Ripple effect

The ramifications of this diagnosis were wide. This diagnosis tested you, but also impacted the nearest and dearest around you. Your challenge in day-to-day life challenged them too. They had to adjust, adapt, and accept the cataclysmic change to their lives too.

While the stiffness and slowness in movement wracked and attacked your body and limbs, they were also wracked by how this disease visibly limited and lessened you. On many occasions, they could not compute the way in which Parkinson’s had forced them all to step up in a meaningful manner by forcing them to become your carer and your newborn daughter’s carer.

Health is not a birth right

I walked around for years (prior to diagnosis) where I naively took my body for granted. My brain and limbs worked fluidly and beautifully. There was an open communication and dialogue between them. My brain instructed and my limbs obeyed. No ifs, no buts.

I assumed that this was my naturally ordained birth right. I was never appreciative about the marvelous machinery that was my brain and body. I just assumed it would be fully functioning forever.

How naive and wistful. Oh, the audacity of this deluded belief makes me blush now. It was not a right. But, a massive, massive gift. A privilege - one that I never appreciated or fathomed, until it was gone.

Relationships matter

When you are too weak to fight or push against the titanium enforced wall that represents your Parkinson’s symptoms, it is okay. It is okay because you are blessed and lucky enough to have a quiet army of cheerleaders in your corner. Cherish them. For they love you unconditionally and although they hate to see you hurt in the way that you do. They still see you and not the disease.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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