I was diagnosed with EOPD in April this year, it was no surprise as I’d been referred to a neurologist 7 months earlier after complaining to my GP about a pain in my shoulder.
The first neurologist I first seen dismissed Parkinson’s but referred me to a movement disorder clinic for completion, I also had scans and blood tests which showed nothing untoward.
My referral to the movement clinic never materialised as hospitals were on virtual lockdown due to COVID-19.
I noticed that I had began to deteriorate and was struggling with certain aspects of my life? My walking was now shuffled and catching my foot every so often?
I just couldn’t write anymore?
I couldn’t use a computer?
Pockets, keys and buttons were now impossible to use and I’d began to violently tremor under stress or cold weather?
My movement was slow and awkward and people had noticed?
I called my gp unhappy I had not received my movement disorder clinic referral so was referred as an urgent appointment with a new neurologist.
She conducted various tests and by the end of the appointment informed me that it was indeed early onset Parkinson’s disease.
I wasn’t at all shocked nor scared?
She discussed the possibility of medication and would write to my doctor to make available cocareldopa if by chance I should need? (Unlucky for me I also have glaucoma and Parkinson’s meds have a habit of making glaucoma worse -but that’s a challenge for another day.)
Three months on from diagnosis I’m still not taking medication- I honestly don’t feel the need to as don’t think my symptoms at present are life changing or majorly disruptive?
I tend to think although I’ve had symptoms for around three years I am still mild - I’m very active and eat well.
I’m not sure how long I’ll be mild for but I do persistently present with the following symptoms-
Very mild tremor exasperated by stress
Poor dexterity - difficultly using mouse, keyboard and writing.
Drooling while sleeping
Periods of fatigue
Catching foot whilst walking
No arm swing
No sense of smell
Mild recurring tremor
I’m able to function as long as there is no stress. Otherwise rigidity, tremor and speech problems are all exasperated.
I’m now not working, as the agency jobs I was doing (special educational needs and behavioural support work) were not conducive to a good environment - always problems and issues, violence, highly stressful, so I decided to step back - this has helped greatly.
I feel better in my general health albeit with no income.
Some days I feel a fraud and feel Somewhat ok, but other days and without warning I do feel awful, symptomatic, exhausted, lethargic.
Every morning when I try to brush my teeth I’m reminded that I have Parkinson’s.
Every step I catch my foot I remember too and when I tremor or can’t go the toilet the stark reality hits home.
I’ve not told too many people about my condition as I do feel a bit ashamed and a few people I have told have dismissed the notion of having Parkinson’s- that’s been a big surprise to me and how a lot of people are uneducated about the condition.
People don’t understand why I can’t pack my own shopping, why I struggle to lock my front door, why some days I feel hungover even though I don’t drink, why I can still drive a car yet not write out a birthday card?
I’ve learned that Parkinson’s is a unique disease and effects everyone differently - in symptoms and progression.
At this moment I feel ok, yeah there is changes and yeah I’m not like I used to be - but I’m fine?
I don’t know how long the ok will last nor how long I’ll be ‘fine’ for?