There are so many things in life we cannot control, but what we usually can control, at least for most of our lives, are our bodies and minds. So, what happens when we start to lose this control? How does it feel to be diagnosed with a disease that feels like it’s slowly robbing us of ourselves?
These questions are what many people diagnosed with Parkinson’s disease have to face. Liz Jackson, the late renowned reporter for ABC who was diagnosed with Parkinson’s, made a documentary of her experiences called A Sense of Self. In it, she talks about the ‘fear of losing control’, of becoming a burden and of losing the parts that make you.
April is Parkinson’s Awareness month and in honour of this, we’re going to look at what it is and, if you’re a Parkinson’s sufferer, what little things you can do to live a fulfilling life alongside your condition. If you’re supporting a person with Parkinson’s, these tips can help you too.
In this article, we’ll cover:
What is Parkinson’s?
What causes Parkinson’s?
What are the symptoms of Parkinson’s?
What treatments are available for Parkinson’s?
10 ways to cope with Parkinson’s and live a fulfilling life
What is Parkinson’s?
Parkinson’s disease is a neurodegenerative disorder that breaks down brain cells at a faster rate than usual ageing does. This happens mainly in the substantia nigra area of the brain, where your dopamine is produced. Dopamine is a neurotransmitter or chemical messenger that communicates between the nerves that control muscle movement and also those that experience pleasure or reward. According to John Hopkins Medicine, when 50-60% of these cells are gone, symptoms of Parkinson’s disease begin to appear.
In Australia, 38 people are diagnosed with Parkinson’s every day and it affects 10 million people worldwide.
What causes Parkinson’s?
There’s no definitive answer. Some cases are hereditary, others are believed to be caused by environmental factors such as toxins or pesticides, while others are attributed to head trauma.
The average age of onset is 60, although 20% of cases are in people under 50 and 10% in people under 40. Men are more likely to develop the condition than women.
What are the Symptoms of Parkinson’s disease?
Many people think of Parkinson’s as frequent shaking because this is the most apparent symptom. There are, however, other symptoms, which vary from person to person and can change over time.
Motor symptoms of Parkinson’s
- Your movements slow down (called bradykinesia).
- Your muscles become stiff and/or sore and your range of motion decreases.
- You notice a tremor in a finger, hand or limb when you’re at rest.
- You begin to stoop and lose your balance more easily.
- You develop gait issues (freezing up, shuffling), stiffness in the arms, or drooping shoulders.
- Your handwriting becomes smaller.
Non-motor symptoms of Parkinson’s
- You lose your sense of smell (usually one of the first symptoms).
- Your facial expressions decrease. This is called masking and gives you a sad or serious look when you don’t feel sad or serious.
- You struggle to remember things, think quickly, or multitask.
- You start to suffer from depression and anxiety (not because of your diagnosis but because your brain chemistry is changing).
- You have restless sleep.
- Your speech becomes quieter, or your voice becomes breathy or hoarse.
- You struggle to chew, bite or swallow.
- You have more saliva in your mouth.
- Your temperature sensitivity increases and you sweat more.
- You need to urinate more often, have constipation often, or suffer from incontinence.
- You experience sexual problems like impotence.
What treatments are available for Parkinson’s?
Parkinson’s cannot be reversed, so treatment is used to manage symptoms.
A neurologist can help you find the best combination of treatments for your case. These can include medications to boost your dopamine levels; surgical treatments such as deep brain stimulation; therapies like occupational therapy, physiotherapy, speech pathology, and psychology; and lifestyle recommendations.
The timing of taking your medication is important, so you don’t experience a sudden lull in your dopamine levels.
10 ways to cope with Parkinson’s and live a fulfilling life
- Exercise – Studies show that exercise can slow or even improve the symptoms of Parkinson’s. Exercise keeps your muscles strong and flexible, improves your coordination, helps with gross motor movements, and improves your posture and confidence.
- Customise your home – Avoid falls by removing tripping hazards. Install supports in the bathroom to make getting in and out of the bath and shower easier and more secure. Light your home well so you can see where you’re going.
- Let your loved ones in – Oftentimes, for pride or to save the feelings of others, we try to get through something alone. Letting your family and close friends know what’s going on with you will help them understand if your behaviour changes or if you’re having a bad day. They can support you through the process, which could actually bring you closer together.
- Focus on what you can do – After initial diagnosis, it’s a process to come to terms with your new way of living. By looking at all the things you can do, you can remind yourself that you’re still you and although you may need help with a few things, you can still do many things for yourself and others.
- Get the right medical support – Go to a specialist to get the right treatments for yourself. It’s a good idea to keep a journal of how you feel after your treatments so you can track if something’s not working or has side effects.
- Keep a journal – It can be very cathartic to get your emotions out of your head and put them on paper. If you struggle to write, use a Dictaphone.
- Educate yourself – It may be difficult at first to accept what is happening to your body. The best way to feel in control of your situation is to learn everything there is to know about the condition and get informed about treatments options and supports.
- Update your wardrobe – Invest in dressing gadgets like shoehorns with long handles, zipper pulls and button aids to make dressing easier. Or, invest in easier clothing such as shoes with velcro fasteners and elasticated clothes.
- Go easy on yourself – Set realistic expectations and take your time to do things. Don’t plan things where you will have to rush or feel pressured. If you’re on medication that helps your movements, wait for it to kick in before doing more difficult motor tasks.
- Allow yourself to feel your feelings – It may sound a bit basic, but the fact is you have a condition that is going to cause you some difficulties. You can still live a full life, but it’s okay to feel sad about it sometimes or take a day to let go of your composure – as long as you don’t let it last too long.
As much as anyone can give advice, when it comes down to it, it’s your journey and you get to decide how to navigate it. We hope these ideas have been helpful and if you need more resources, here’s a page of documentaries that may help your understanding of Parkinson’s and show you that you’re not alone.