Hold Back the River

In this Feature author and founder of the charity Parkinson's EQUIP, Ray Wegrzyn, talks about the experiences with Parkinson's that led to the creation of his book, Out of Order - My Life With Parkinson's. edited by Alice Rose Bolton

Emotional health for me starts with one’s state of mind. The ability to live in the moment and be involved can give you a deep sense of satisfaction. Each Persons experience is so intrinsically different . How you handle difficulties can be the difference between being a person with a good sense of wellbeing and struggling with your mental health.

We often make assumptions about mental health and these assumptions can be quite dangerous. I often found myself regularly turning to the unlikeliest of people. I worked as a probation officer ,chaperoning people whose ability to assess their own emotional health was questionable at best. Some had little going for them in their life . They showed no compassion or concern for other people’s feelings. These peoples experiences of the world were ego-centric ; The world should serve them and them alone. I spent a lot of time during that period trying to help these very people understand that what they needed was different from what they wanted. They would need to find the drive within themselves to achieve it. There was no easy road to navigate. This advice would come full circle when I faced my own troubles.

I was nearly 40 before the dark places that depression creates , crept in . My issues had been festering for a long time . My dad passed away when I was three , so I was too young to really understand. As I grew-up the extent of my anger was to blame God for taking him away. It became a difficult issue to process in my mid-teens when I was trying to figure out my future and make sense of my past.

In the five years from 35 to 40, two major events occurred that had a significant and negative impact on my life . I became a bereaved parent when our third son died and was subsequently diagnosed with young onset Parkinson’s ( a degenerative brain condition). There was no reason for these things to happen to me. I did nothing to warrant either of them. I tried to deal with both of these issues in what I considered to be an appropriate way. These were major challenges certainly , but they could be managed.

I continued working for 16 years and was fortunate that the progression of my Parkinson’s was relatively slow. I worked harder than before and tried to keep a positive attitude towards my life. However in 2010 I hit a wall. Exhausted and unwell, I was unable to manage very much at all. I thought ‘I just need a couple of weeks off to recuperate ,strengthen myself ,then I can return to work’. My mind had other plans. I had excellent support from my manager and work colleagues, even despite wishing to work I had to recognise the reality. I could no longer could continue to do the job I was in.

Early retirement on the grounds ill-health. and a slow descent into dysfunction marked the next chapter of my life. I had held back the river ,but had now things were seriously starting to crumble and I was not in control.

Our society celebrates in the shared moments that indicate the passage of time . They demonstrate a growing or maturity coming to us. From baby’s first steps , moving schools , maybe even university is on the horizon. Then the difficulties of adult life begin, maybe you meet a partner, a change of direction at work, starting a family, and then…

What comes after retirement for most of us? All that I could see was declining health followed by my non-existence. I couldn’t get the thoughts of mortality out of my head . Emptiness and purposeless left me feeling as though I had been thrown onto a rubbish tip .

A regular supply of antidepressants from my GP, as well as some formal counselling was what I needed to figure out what to do. My story needed to be told, as much as anything to reaffirm to myself that I had made progress and would carry on to achieve in the future .This was the motivation I needed , I would write.

Years previously, me and a friend with Parkinsons collaborated on a book of art and poetry . This had been a fairly successful venture , at a time when I was feeling relatively active and energetic.

This time it was a solo project. I set about writing, or perhaps I should more accurately say dictating as tremors had made my typing very inaccurate . The first attempt was a very short narrative which covered the highlights. I then set about filling in some of the blanks. After some time I asked my best friend to read through it. Positive comments flowed forward with some suggestions for improvement . I redrafted and edited a number of times before I had compile a document that I thought was more or less what I was trying to say.

This draft was left alone for over a year. It had lifted my mood to initiate it as a project. I had to worked on it reguarly and it gave me purpose. In parallel to writing I had also set up a charity to support people with Parkinson’s ( with friends) and had begun saxophone lessons. These activities combined gave me short and medium targets which gave me a sense of purpose which help me to get up in the morning.

However, finally in 2018 I realised that if I didn’t do something else with the draft of the book it would sit in my drawer forever. In some respects this would have been the easiest thing to do, but I had told people I had been writing it and there was some interest in it in my general circles. This helped me to decide to try to go the next step and self publish. So I did .

It’s very important to clarify that writing the book was not the only solution to my depression.It is important that when you are struggling that you reconnect with the things that make you feel alive. Do something that works for you as an individual, whether that might be gardening, walking in the hills or taking up bicycle repair work. Take the first step in doing something that gives you some satisfaction and it will help you move in the direction of recovery.

Anyone can experience depression, and even though it may not always be clear where depression has come from, it can strike at any time. It will not go away without action of some sort being taken. Asking for help is the right thing to do, not a sign of weakness, and taking antidepressants is not a sign of failure.

All too often depression is associated with a chemical imbalance in the brain as well as other emotional health issues. Antidepressants are one way to re-balance those chemicals and therefore assisting with part of the problem. Ultimately, it’s useful if you’re able to define your terms. Be clear what it is you think you need or want and take control of the situation

If you want to purchase Ray's book, Out Of Order - My Life with Parkinson’s, you can find it on Amazon right here.