Drug-induced Parkinsonism: Norma's story

I’m not afraid to talk about my mental health. Many people do suffer and there should be no stigma about it. 

I experienced mild postnatal depression after the birth of my first child in the late 80s. After my second child was born 2 years later, I was hospitalised for postnatal depression and later developed bipolar disorder. 

At times I was in a bad place with depression. But I had a lot to look forward to and I was determined to work with my consultant to get better. 

My third child was born 6 weeks early, weighing just over 3lb. He was taken to the special care unit, but after half an hour, he’d pulled his tubes out and we knew we had a little fighter!

Our world was shattered though, when at 8 months, he became critically ill with a bowel problem. Thankfully he pulled through and we felt extremely lucky. Afterwards though, I experienced a lapse in my mental health through the stress of nearly losing our little boy. 

With the right medication and various talking therapies along the way, I got my bipolar under control. I have been well and truly in remission for around 16 years now.  

A new diagnosis

Around the same time I went into remission, I began feeling unwell. I had an extremely bad cold that I could not shake off. Then I began experiencing pins and needles in my right hand.

I went to see my GP and he thought I was having a stroke because I was dragging my leg. I was sent straight to the hospital, where thankfully a stroke was ruled out. But all the other tests came back clear too. Eventually I was told it was some form of unexplained neurological event that left me with a balance problem. 

It was when I mentioned my symptoms, including my poor balance and a tremor I had developed, to my consultant psychiatrist, that I was referred to a neurologist. I had a DaTSCAN, but didn’t get a definitive diagnosis.

In 2015, I began experiencing rigidity in my wrists. Following another DaTSCAN, I was diagnosed with Parkinson’s and in 2019, I had a third scan.

In the 4 years since my last scan, my symptoms had stayed the same so the original diagnosis was changed to drug-induced parkinsonism – a result of some of the medications I have taken to treat and manage my bipolar. 

I asked my consultant whether if I stopped taking my bipolar medication, I could recover from the Parkinsonism, but he said it was unlikely.

I still need to manage my bipolar and alternative medications can affect the immune system, which I don’t want to compromise.

I also understand that medications aren’t always an exact science, so what works for one person might not work for another. So I continue to take the same medication for my bipolar and also now take levodopa to help manage my Parkinson’s symptoms. 
 

Everyday challenges

My Parkinson’s symptoms can be challenging. I have days when I struggle putting socks on or doing up my bra. Sometimes my tremor is so bad I can’t hold a drink without spilling it, or I get 4 Weetabix in my bowl instead of 1. On other days, I can just burst into tears. 

My balance is still a problem, but I try not to let it stop me. I still aim to get 10,000 steps in a day and have developed strategies to help me balance when I'm out walking. I’ve even been on a horse in California. Unsurprisingly with my balance I fell off, but the spectacular view of Lake Tahoe was totally worth it!

Being out and about has its ups and downs. I’ve been stood on a crowded bus in London, which kept jolting and I was shaking, but no one offered me a seat. On the other hand I've been on a packed tube and an elderly lady gave up her seat for me as she saw I was struggling.  

I have various tips and tricks that help me manage if I'm in a bar or restaurant. If I order a lime and soda, I ask for a half pint in a pint glass. When the bartender looks at me quizzically, I feel like saying, ‘You can put it in the top half’!

I have become a slow eater, but mostly people aren’t bothered. At family get-togethers, my children help me to put things on my plate and Paul, my husband, helps me to cut things up when necessary. 

Keeping going

Despite everything though, I always remain positive about my situation, because really, what’s the alternative? I have a loving family, grandchildren and really good, supportive friends who all help to keep me going. I play in a brass band and have made some great friends in the group.

I also have a very supportive health care team looking after me. I’ll be 60 next year and am determined to keep going. 

I consider myself a very strong person. I was absolutely determined to get my bipolar in remission and I hope for the same with my drug-induced Parkinsonism.

I know there is a small percentage of people with my diagnosis who go on to develop what I call ‘full blown’ Parkinson’s. I hope that one day research will find a cure for this, but for now, I remain optimistic my condition will remain stable – I will not be beaten.