20 Apr 2018
Five things you should know (but probably don’t) about Parkinson’s
Parkinson’s is regularly featured in the national media. We hear frightening statistics and, often, the focus is on the negative impact of the disease both for sufferers and their families. It can all seem quite scary and, in all honestly, a little bleak.
At Caremark, we’re on a mission to educate and reassure sufferers and their families that life, whilst admittedly a little different, can go on being enjoyable and rewarding. We believe that raising awareness and changing attitudes is the key to living with the disease. Did you know…
1) Parkinson’s doesn’t just affect older people
Parkinson’s is a disease that affects the brain. It’s known as a degenerative neurological condition, meaning that symptoms get worse over time. Whilst it tends to affect people from middle age onwards, Parkinson’s disease has in fact been known to affect all ages.
People with Parkinson’s have a deficiency of a chemical called Dopamine. This is caused by the loss of important nerve cells in the brain which produce the chemical. Dopamine is used by the brain to send messages that help control movement: anything from walking and talking, to writing and even smiling. Eventually, as Dopamine levels decline, the brain can no longer control movement properly and that is when the symptoms of Parkinson’s can appear.
2) You’ve had Parkinson’s a while by the time you show symptoms
Symptoms of Parkinson’s don’t appear until Dopamine levels in the brain have dropped below a certain level. This means that brain cells have already been lost and have ceased to function properly for months or years before the symptoms eventually start to develop.
Just as everyone’s brain is totally unique, the types and severity of symptoms that people experience with Parkinson’s is totally unique to each individual. However, some are more common than others and knowing what to look out for is not only sensible but can make a big difference to quality of life in the future. Getting a diagnosis and starting medication as soon as possible is key.
Probably the most well-known symptom is tremors. They usually start on one side of the body but can spread to both sides over time. The trembling tends be most obvious in hands and arms but can be visible on the jaw and feet. Other common symptoms include non-responsive digits, muscle stiffness which can affect facial expressions, joint rigidity, loss of balance and loss of sense of smell.
In the early stages of the disease, these symptoms are gradual and develop slowly. However, if you start to notice them in yourself or a loved one, it’s important that you consider Parkinson’s as a possibility and seek medical advice as soon as possible. Visit your GP and explain your symptoms and tell them you think it could be Parkinson’s. You will likely be referred to a specialist who will be called a Neurologist or a Geriatrician.
3) You don’t need to go into a care home
There’s no reason why people with Parkinson’s can’t stay at home. Most people are able to do so and continue living their lives with as much normality as before with a combination of medication and pills to help control the symptoms in its earlier stages.
As the disease progresses and symptoms become more varied and severe, sufferers may require the help of a carer to assist with things like dressing and bathing. Eventually, full-time care may be necessary to help with everyday activities, meal preparations and mobility. However, this still doesn’t mean that the only option is a care home. At this point, a live-in carer can provide a solution.
Hospital visits may be needed from time to time but there is no reason why you can’t live as independently as possible in your own home. Parkinson’s is a fairly slow progressing illness and there may well be years between diagnosis and needing a substantial package of care.
4) What will ‘normal’ life look like?
Initially, normal life will look very much like your normal life now. This is a slow progressing illness and by adapting to your symptoms as they develop, changes in lifestyle will be less daunting than you think. The things you will notice more at first are the smaller things like your handwriting becoming messy or having to fill your drinks glasses slightly less so as not to spill liquids if you shake a little. These are things you will notice but most others around you won’t. Essentially, you will still be able to enjoy most of the things you enjoy now but may just require more help to do so.
As time goes by, everyday activities that were part of a normal routine such as washing and dressing will become more difficult and you will start to need support from family or carers. ‘Normal life’ will be an acceptance that housekeeping and domestic work may have to be left to others. Cooking and preparing meals will eventually be something that is not possible alone. Medication will become part of life and, for some people, it is critical that medication is taken at the correct specified time. This means that a little extra planning and a more regular routine may have to be developed over time.
None of this means that you can’t still be active, social and involved in the things that you love. Carers or live-in companions can help you to maintain as much independence and dignity as possible so that you can continue to enjoy life.
5) Exercise can change your life
Recent research has shown that exercise seems to protect the Dopamine-producing nerve cells that are lost in Parkinson's, helping them work better and survive for longer. This could potentially slow down the progression of Parkinson's - something no current drug can do.
Exercise is important for everyone but even more so for people with Parkinson’s as muscle stiffness and joint rigidity are common symptoms that can hinder your mobility. You should make exercise a part of your daily routine to help you to strengthen your muscles and increase flexibility in your joints as well as maintaining your general fitness levels. All of which will help you to live more comfortably with the disease on a day-to-day basis.
Regular exercise will also provide a sense of achievement, alleviate stress and reduce feelings of anxiety and depression. Of course, you can exercise at home but why not turn it into a social activity? Your GP or social worker can help you to find specialist classes tailored for Parkinson’s.
Some final thoughts: Compared to two decades ago, we know a lot more about Parkinson’s and exactly what is happening inside the brain to cause it. By knowing this we’ve been able to develop better treatments for the illness and, therefore, better outcomes for sufferers. A greater understanding has also raised better awareness throughout the entire health and social care system so the treatment and support you will need is more readily available. The services you can access to maintain your independence are growing all the time.
Parkinson’s is life changing but can be best managed by taking a proactive and positive approach to ensure you can lead as 'normal' a life as possible. This means eating well, taking regular exercise and having the right care, support and companionship so you can get the most out of life.
For more information or to find help and support in your local area, visit www.caremark.co.uk