PD and Me- Part 1

I thought I would write about my life as someone who cares for someone with Parkinson's disease, as my entire life for the past 10 years has revolved around being the sole carer for my girlfriend who has PD.

What is Parkinson's Disease?

For context, Parkinson's disease is a chronic and progressive neurological disorder that affects the nervous system. It is caused by the degeneration of neurons in a specific part of the brain that controls movement. The symptoms of Parkinson's disease typically develop slowly over time, and they can vary in severity and progression from person to person. Some of the most common symptoms of Parkinson's disease include tremors, rigidity or stiffness in the limbs and joints, slowed movements, and difficulty with balance and coordination. People with Parkinson's disease may also experience a range of non-motor symptoms, such as cognitive impairment, depression, anxiety, and sleep disturbances.

The descriptions of PD are fairly straight forward and easy to spot, in theory, actual diagnosis of PD can be a long and arduous process as initially the disease can be mistaken for other disorders and/or diseases.

My Girlfriend's Diagnosis

This is where my story begins, me and my girlfriend have been together for nearly 20 years. She is a lot older than I am, which has never been an issue with our relationship. Over the years she has had a few diagnoses for other disorders. She had had numerous seizures before we met and a fibromyalgia diagnosis. Then just over 10 years ago the UK government started, what I can only describe as witch hunts against anyone who was not fit for work due to medical reasons. 

The Stress of the "Fitness for Work" Assessment

My girlfriend had been slowly becoming shakier and her balance had started to become less reliable, these are classic early symptoms of PD but at the time we had no idea, just put them down to the stress of the situation we were currently going through. After months of stress and general terror, we both felt during the “fitness for work” assessment process my girlfriend was found fit for work. This was a decision reached by medical “professionals”. I type this with a shake of my head, a retired GP and a nurse had arrived at that conclusion. We were in shock and decided to go through the appeals process as allowed by the government. At the end of the appeals process after going in front of a tribunal panel, she was found fit for work.

Having been found fit for work we were now obliged to make a claim for job seekers allowance, which is a benefit given to people who agree to look for work. I worked hard in the pursuit of a job, unfortunately around this time, due to the stress and anxiety brought about by the whole system used by the government at the time, my girlfriend started to show accelerated symptoms of PD, she started having constant attacks of night terrors, screaming loudly over and over again every night. I found it increasingly hard to have more than 30 minutes of sleep before being woken up by blood-curdling screams. We had moved into a bungalow by this point as my girlfriend could not manage stairs anymore, no matter which room I was in in the house I would be awoken by screams. My neighbours must have thought murder was being committed each night.

The Job search and Sanctions

The act of job search became harder and harder to accomplish, I was barely functioning on a handful of minutes of sleep each day, days blurred into each other, and I found myself sleeping on the couch at every available opportunity. Around this time the government rolled out a system called “sanctions” which down to the discretion of each person's job seeker advisor meant that if you were not deemed to be searching hard enough for a job you would have your benefit payment stopped for a period of time. 

Each time I set foot in the job centre I would be filled with trepidation and a tidal wave of anxiety about whether my job search would be sufficient. We had been sanctioned for two months in a row, meaning we had very little money to live on and I was at my wit's end, I was finding it harder to actually sleep when I could because I would wake up instantly, my chest tight, my breathing laboured, at times I felt I was having a heart attack. Then my girlfriend went to the doctor for a check-up with a nurse. She was twitchy and shaking, with classic PD symptoms again. The nurse asked her after a short discussion about her health if she had been tested for Parkinson's.

And that is how our journey of life with PD began. I will stop there for now but rest assured I will write more about PD and Me in the future. I know this is a large amount of text but I feel I need to write it.

Thanks

Scott