Drug-induced Parkinsonism: Norma's story

Although rare, some medication can cause drug-induced parkinsonim. Neuroleptic drugs (used to treat schizophrenia and other psychotic disorders), which block the action of the chemical dopamine in the brain, are thought to be the biggest cause of the condition.

Norma has lived with bipolar disorder since she was 26. In 2015 she was told she had Parkinson’s, a diagnosis that was later adjusted to drug-induced parkinsonism. Here, she shares her 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.  

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.

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. 

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.

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.

Find out more

  • Parkinsonism is a term that covers several conditions, including Parkinson’s and other conditions with similar symptoms such as slow movement, rigidity (stiffness) and problems with walking.
    Read more about types of Parkinsonism.
     
  • There is currently no definitive test for diagnosing Parkinson’s. A specialist will examine you to look for common signs of Parkinson's. You may also be sent for a scan to help diagnose the condition.
    Read more about how Parkinson's is diagnosed.