Journey Is A Stupid Word

Who the hell came up with the word journey to describe living with a life long debilitating, progressive disease like Parkinson’s? What a ridiculously, stupid and demeaning term to use. The reason I say this about the word “ journey” is it states in most dictionaries that this world describes a difficult and arduous process with enlightenment and finding at the conclusion. The following describes a chronic disease where there is no enlightenment:
1. Parkinson disease has no ending, just the abyss of despair.
2. There is nothing to gain from slowly and at times painfully coming to the end of your life being a burden and a duty to all those you have loved.
3. And what the hell do you learn at the end of this shit journey, except to feel complete guilt and sorrow if one of your children are the unfortunate souls to get this disease.

My story

My story started a little while before my 45 birthday in 2018 just before my life took a nasty turn and completely changed the trajectory of mine and my families life, forever. A number of years prior to the dreaded diagnosis, I kept smelling wet grass and licorice (my favorite lolly) and thought absolutely nothing of it, even when the left leg shake started, mainly at rest. I would joke when my children or husband would say “Geez, your leg is going to town today” and state “It’s ok it’s just my Parkinson,“ irony can cut deep. When this behavior kept on, my eldest daughter demanded I get a referral from our doctor to a Neurologist, I obliged, thinking I will do this to appease her. I made the appointment but then I became waylaid by another medical condition and ended up with a hysterectomy, in which the appointment with the Neurologist was cancelled and put out of site and out of mind, even though none of the symptoms had stopped, I focused one-eyed on my newest ailment.

My diagnosis

A number of months later, my eldest daughter, again, yelled at me to get my butt to the Neurologist and find out what is going on with my leg, thus I made the appointment. On the 23rd May 2018, the day my life changed irrevocably, I saw my first Neurologist. He had me do all these weird hand movements, walk up and down the hallway of the hospital and twenty minutes later I was told in no uncertain terms, I absolutely had Parkinson disease and my left arm doesn’t swing. I was given a MRI referral, paid for my appointment and booked the next, all the while thinking how am I going to tell my amazing husband and beautiful daughters.

How can I possibly tell my family?

I got in the car and rang my eldest daughter, who was at work, and the second I uttered those terrible words... I have Parkinson, I never cried so hard in my life. My daughter's reaction was identical to mine, this was not meant to happen and it is going to change everything about our family and our lives. My next call was to my husband, he went quiet, as I talked about what had happened in the Neurologist office, even mentioned the lack of left arm swing. My husband said that he had noticed this for a while and thought I was just cranky, with him, if only this was the case! My youngest daughter was less obvious in her reaction, she has always been close chested, but unbeknownst to any of us, her marriage was falling apart. I reflect back and I don’t think she even realized what was happening to her family and the cracks that had started to form. My guilt is so heavily laden on giving her another burden to bare, what a retched mother I am. Worst of all was my self involvement of my own concerns that I had no idea what was happening in my daughter's life, as I forgot to keep watch, my baby girl's life was eroding away and I didn’t notice, I will never forgive myself.

The start of appointments

An MRI was scheduled a week after my Neurologist appointment, more of an overview, as no scan can confirm a diagnosis of Parkinson disease. My next appointment with the Neurologist, a week after my MRI, I attended that appointment alone. My Neurologist asked if I had been having seizures, as the MRI had shown an excessive build up of iron deposits on the Basal Ganglia part of my brain which was more consistent with someone who was 30 years older. I stated matter of fact, that I had never had seizures. I was referred to a super specialist in Sydney, it would take 3 months to see him, and he had given the beginning of my life long arsenal of medications.

My husband's absence in my first appointments with the Neurologist, I can not answer, as I am unsure why. It could have been his way of dealing with the adversity and worry, or he just felt obligated to keep working to make sure everything will be financially OK. I have never asked him why, so for me to answer this honestly would be remiss.

I went to visit the super Neurologist in Sydney, with my husband in tow. The first thing he wanted to do was an extensive genetic test, which was sent to Germany and would take a number of months for the results. Upon the return of the genetic test, it found a big fat zero of information, as nothing appeared on these tests for anything. So, genetically I am as clean as a brand new whistle, so why the hell am I the only person in my family, on either side, to have Parkinson disease, what could possibly happen next!

Five months after the terrible diagnosis of Parkinson’s, our feet are swept out from us again. I was diagnosed with Breast Cancer and of course no little lump but four tumors, milk ducts all full of carcinomas and Lymph nodes are positive. I had a left breast mastectomy with eleven Lymph nodes removed. This was followed by chemotherapy, radiation and anticancer drugs for ten years post treatment. Unfortunately, I couldn’t complete all my chemotherapy as the drugs were reeking havoc with me and causing a thing called neuropathy, which makes your extremities go tingly, then dumb and this could last a life time, so all the amazing doctors put a stop to it.

Post treatment

Today I am five years post treatment in September 2024, woohoo for me. However, my uncle who was diagnosed with Leukemia three days before my diagnosis, passed away twelve months later, one of the saddest days of my life. My story of Parkinson disease continues today, it is progressing, thankfully slowly. I am still working but for how long we don’t know, but when I have to leave work, then our lives will alter again and unfortunately for the negative.

My daughters are both doing OK, they both try very hard to not burden me with their worries and try not to rely on us for babysitting. I find though my relationship with my children has changed, I always knew that they were not going to need me so much as they got older, but I feel they keep things from me so I don’t worry and then become overly stressed, as this aggravates my Parkinson. This at times makes me feel redundant, useless and a thorn in their side. My husband is a different story, I worry he has been short changed in so many ways, growing old together and really enjoying it, is not going to happen. I will embarrass my husband when I can’t walk properly. He will not get fulfillment from life as he will have to always be looking after me, which he keeps telling me he wants to do. I believe this is too much to expect of someone regardless how much they say they want to be there and care for you, for their love has no bounds. But for now I will keep soldiering on, taking one day at a time as my story (not a bloody journey) continues.

Cindi Betts

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