World Parkinson's Day: Vicki and Ian's story

Before I met my husband Ian, I didn’t really know anything about Parkinson’s Disease (PD).

Ian has suffered from PD for 22 years. He has what is called ‘early onset Parkinson’s Disease’ and was just 38 years old when he was first diagnosed.

People with PD are unable to produce enough dopamine. This is because some of the nerve cells in a part of their brain no bigger than a fingernail have died and stopped producing the chemical.

Without dopamine, people suffer from tremors, muscle stiffness, and slowness of movement.  They also have problems with their sleep and experience insomnia, which can exacerbate the symptoms more as they’re tired and drowsy. People also have trouble with everyday tasks such as dressing, washing, and eating. They lose their sense of smell – imagine not being able to ever smell a beautiful flower again for the rest of your life. Walking also becomes difficult as PD causes stiff muscles, inflexibility, and cramps. It is a disease that truly affects almost every area of life.

Symptoms of PD are managed by medication. People receive a synthetic form of dopamine, normally in tablet form. Now, instead of your brain deciding how much or how little dopamine you need during the day to control your movements, you take a prescribed amount every few hours. This could be too little or too much, and factors such as how you are feeling and what you have eaten can determine if the tablets will work or not.

After being on a certain medication for a few years, it can lose effectiveness and not adequately control certain symptoms of PD. This happened to Ian, and as a result, he suffered from dyskinesia – involuntary muscle movement – badly. Because of this, Ian’s consultant thought he was a prime candidate for Deep Brain Stimulation (DBS) surgery.

DBS is a neurological procedure where they place a neurostimulator into your brain with fine electrodes that send pulses into the area where the cells have died. You then have a powerpack put under your skin just below your shoulder blade and control the neurostimulator using a device about the size of a mobile phone.

Ian had the surgery in September 2020 and for us, it has been a game-changer and has made life a lot easier. Ian still has Parkinson’s, but the dyskinesia he suffered from has completely gone. Who knows what will happen in the future in terms of research into PD? I try not to think too far into the future because like my mum used to say, “You might be worried about something today that might never happen tomorrow!”.

I do know that whatever is thrown at us we’ll battle through it head-on and together.

Vicki Hindley, Governance and Executive Support