Living with apathy and Parkinson's - Shafaq's story

Before I was diagnosed with Parkinson’s, I was experiencing apathy, tiredness and low mood. I thought it was to do with being a mum to young children, but once the sleeping through the night phase had finished, my tiredness just didn’t go away. 

It would seep into my bones. I was working half days at the time and the children were still napping. So I would finish work, pick the children up from nursery and then nap when they did.

One time I turned up to work and just burst into tears in the practice manager’s office. She asked me what’s wrong and I said, “I’m just so tired.” Every little mole hill had become a mountain and I felt like a snail with a huge shell on its back.

I also had a lack of desire to do anything. I’d been a social butterfly. I was very outgoing. Now I didn’t want to go out at all. These feelings were totally alien to me. 

Slowing down

Six years ago, my husband, Ased, who is a surgeon, got a position at a hospital in West Yorkshire, so we moved south from Newcastle.

It was a horrible few months - I’d established myself in Newcastle after moving there from London, but had no friends in Wakefield. My older son struggled a lot with the move and found it very difficult. That’s when my apathy progressed into low mood.

If I had to work, I would crack on. But on my days off, I would drop the kids at school, go home, pull the blinds down and crawl back into bed. It would be the same at weekends if the kids were at sports clubs. But I needed that time.

I felt like I was having to scrape myself off the floor and reform myself everyday. I’d been to the GP, I’d had blood tests which were all normal. But still, it was like I was going mad. I was slowing down and couldn’t keep up with the world.
 
Getting my Parkinson’s diagnosis was like the pieces of a puzzle coming together.

Seasonal change

My apathy gets much worse during the winter months. For example, I know exercise is good for me, but when my apathy is bad, even trying to do 30 minutes of physical activity a day is very hard. I have a constant internal dialogue running - ‘You should do some exercise. Why aren’t you exercising? Do you not even care about yourself?’ It’s a vicious circle.

I’m part of a group made up of health professionals working with Parkinson’s and we talk about this - every year we know winter is coming, but each time it comes round again, I feel like I’ve been suckerpunched. 

I’ve only been diagnosed for 3 years so I’m still learning, but I now try to mentally prepare myself. I set goals and always have something to look forward to in winter. I organise lots socially and keep my diary busy. 

If there’s one thing I hate it’s letting people down, so it’s important for me to be accountable to others. If you plan to do an exercise video at home at 6am for example, no one will know if you’ve done it or not.

So I go to a kung-fu group in a local village - if I’m not there, someone will text me to see where I am. I also go swimming once a week with a friend, so I can’t get out of that easily. 

My family is also a huge support for me. When Ased is at work, he’s on 110% of the time. But at home, he laughs at how laid back he is. He tells me that sometimes it’s OK to take it easy and that I’m too hard on myself. So I’m trying to be gentler and for my family, keep buoying myself along.