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Early Onset PD | James Parkinson | Symptoms | Coming to terms |
| Golden Rules | How Common? | Children | Relationships |
What is Parkinson’s disease?
Parkinson’s disease is a progressive disorder of the brain resulting from the degeneration of nerve cells in the part of the brain which helps regulate and control smooth movement throughout the body.These nerve cells produce dopamine, the substance that takes messages from one part of the brain to another, telling it how to control movements in the body. When there are fewer nerve cells, and less dopamine, fewer messages reach the brain.Simply, Parkinson’s is a disease of the brain that affects body movements.
Early Onset PD (EOPD)
Parkinson’s disease traditionally affects people 50 or older. Many reports indicate that 10% of all PD patients have symptoms – or are diagnosed – before the age of 45.Coming to terms with Parkinson’s disease can be a hard thing to deal with under any circumstance, but it’s effects can be enormous when diagnosed earlier in life.
Depression may occur more frequently in EOPD than in onset later in life, and issues of employment and marriage will be more prominent. Some claim that dystonia in one foot is often a signifier of EOPD.
James Parkinson
Dr James Parkinson gave his name to Parkinson’s disease. His original diagnosis in 1815 was so accurate it is still used today. He wrote an essay, describing Parkinson’s as “the shaking palsy”. The James Parkinson Tulip is the national Australian emblem for Parkinson’s.
Symptoms
The three main symptoms associated with the disease are tremors, stiffness in the muscles and slowness of movement.
A tremor is a continuous, involuntary shaking of part of the body. Most tremors associated with Parkinson’s disease occur ‘at rest’ or whilst the limb is not in use. These can become worse during anxious or stressful times. In most cases, tremors can be successfully managed by medication.
Stiff muscles are when the muscles seem to be unable to relax and are tight, even at rest. This could feel like your muscles are not responding to your commands. You could also suffer from rigid posture due to muscle stiffness.
Slow movements occur because the brain is not able to control smooth and delicate movements. As your body slows, you could have trouble starting or stopping movements, or get tired quicker than normal. Speech and/or swallowing muscles could also be affected.
Despite being the most common symptoms of Parkinson’s disease, these are not the only three. At later stages of the disease, other symptoms can present themselves. These include poor balance, walking difficulties, speech difficulties and falls.
It is important to remember that not everyone is affected by Parkinson’s disease the same.
Coming to terms with PD
When most people are diagnosed with Parkinson’s disease – especially at a younger age – they have limited knowledge of it, and don’t believe it could happen to them. Some are more devastated than others, and many are relieved. Whatever the emotion, PD is a hard diagnosis to deal with.
The first step is to get as much information as you can. These days, the internet is a vast source of knowledge. Be careful, however, that what you read is viable. A GP can help you to understand any technical or medical terms, and advise you on where you can get added help. Your local Parkinson’s Organisation will be a wonderful support network and pool of knowledge. (See links page for details of organisations near you.)
Take time to grieve. You have lost your life as you once knew it. There will be a big change ahead of you and it is okay to feel upset. Grieving takes time. Be open about feelings, and talk to family and friends.
Consider the changes and challenges you may have to face in the future and prepare yourself for them. Things will be difficult, but a positive mindset will definitely help along the way.
Golden Rules
STOP…if you’re having trouble, RELAX…before you start again, THINK…about what you want to do, BREAK DOWN…the movements into small steps, REHEARSE…the first step in your mind, START…the movement (use triggers if it helps).
How common?
Despite it being estimated that there are approximately 100, 000 people living in Australia with Parkinson’s disease, only 1 in 7 people are under the age of 40.
Many young people suffer from Parkinson’s disease differently from those diagnosed at an older age. 50% have no tremor on initial presentation, and 50% never get a tremor. As well as this, progression is usually slower in young people.
Children
The explanations needed will change as your child ages. Once he or she can talk, questions will follow about new discoveries or experiences but remember, Mum’s tremor or Dad’s slowness isn’t new. When the child starts to come into more regular contact with other parents and begins to see that his own Mum or Dad is “different,” the harder questions will come. The key is giving your children the opportunity to express their fears, concerns, worry or even anger so that you as their parent can offer counselling or alternative ways of coping with whatever the situation may be.
Having a parent with physical limitations can change a child’s outlook on life for the better – especially if he or she has a positive attitude. A child will develop a very similar attitude towards disabilities as his/her parents. If one or both parents is always complaining about the limitations PD has caused instead of living their lives to the fullest, the child can grow up to be resentful and inconsiderate.
Coping with a child would be difficult for any parent, but more so for one with Parkinson’s disease. Gather a support team – family, friends, co-workers – anyone who can help you out when things get too much.
Relationships
For those who are diagnosed with Parkinson’s at a young age, building and maintaining relationships can often be a very traumatic event. It is important to remember that many people are still naïve to the causes and symptoms of PD, and do not completely understand it. The most important tools in any relationship are honesty and trust; this is even more important when dealing with PD.
Many couples find that understanding and dealing with PD actually brings them closer together because they have to rely on each other. It may be an idea to talk to other couples/families in similar situations and discuss how they cope best.
When a partner/lover is also the PwP’s carer, it is often hard to switch between the two roles. It is important to remember that you don’t need to be both at the same time. Take time out to be with each other as a couple, not in a carer/dependant role.
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