Parkinson’s Disease Awareness Week - Kerry and Dave's Story

This week is Parkinson's Disease Awareness week. Kerry, Patient Services Director here at Heart of Kent Hospice would like to share her husband Dave's Parkinson's story.

Hello, my name is Kerry, I am Patient Services Director at Heart of Kent Hospice. My husband Dave was diagnosed with Parkinson’s disease in April 2022, we would like to share his story.

Parkinson's disease is a condition in which parts of the brain become progressively damaged over many years and continues to worsen over time. Around 145,000 people live with Parkinson’s in the UK, because the symptoms develop gradually and mimic other neurological conditions, diagnosis is sometimes slow, there is no specific blood test to diagnose, diagnosis is generally based on a number of symptoms which might lead to a specialised scan.

One immediately thinks of tremor and shaking, however 30% of Parkinson’s sufferers do not have a tremor – Dave doesn’t.

Our journey to diagnosis has been bumpy and tough, it started five years ago, Dave started falling over, couldn’t maintain his balance, he always fell forwards. I was watching my ex-firefighter, ex-ruby playing husband deteriorate and turn into an old man shuffling and falling.

He was depressed and lost all his motivation for day to day living. We now know depression is a significant Parkinson’s symptom.

2020 was wiped out recovering from significant injuries following two falls. He had two MRI scans of his brain which showed nothing that might be causing the symptoms. Had he had a stroke, had he got a brain tumour? We just knew something serious was happening.

The Covid-19 Pandemic also hindered our progress in getting a diagnosis, until I insisted (in tears on the phone to the Doctor’s surgery) on a face-to-face appointment with our GP.

This assessment led finally to a referral to a Consultant for care of the elderly medicine.

Within five minutes of meeting the Doctor at the hospital she confirmed our suspicions, “yes, it is very likely you have Parkinsons.” Dave’s response was “so I’m not going mad then?”

One way to support a likely Parkinson’s diagnosis is gauging the improvement in symptoms when medication is started. The usual medication replaces the levodopa that the brain naturally secretes to support neurological function.

Dave’s symptoms initially improved 80-90% after starting the medication, which negated the need to have a special scan and confirmed the diagnosis.

It was a relief for us to have a reason to hang the multiple symptoms on and reassure him he wasn’t going mad. He continues to be supported by the Parkinson’s Medical Team and has his medications tweaked as required.

Life is very different for both of us, we now proudly own two mobility scooters and have travelled abroad for holidays taking the scooter onto the plane, anti-depressants are slowly lifting his mood, I’m not sure he will ever be the “life and soul of a party” again, but we will give it a good go.

We both hope sharing our story might help others on the diagnosis pathway, it’s not all about the visible shaking, but a multitude of symptoms: becoming really slow, soft voice, poor balance and falls, sleep disturbances and depression.

We would like to thank Kerry and Dave for bravely sharing their personal story to help raise awareness during #parkinsonsawarenessweek. If you would like to access more information and support, please visit https://www.parkinsons.org.uk/information-and-support.