Parkinson’s is a relatively well-known and documented condition, most commonly known for affecting adults over the age of 60. However, Parkinson’s can also affect younger people, known as young-onset Parkinson’s disease (YOPD).
While symptoms do typically overlap with traditional Parkinson’s, younger people often face unique challenges from their disease. Today, we’ll explore everything you need to know about YOPD and how it can be managed effectively to improve quality of life.
Who Can Get Young-Onset Parkinson’s?
Early-onset Parkinson’s is characterised by the development of symptoms between the ages of 21 and 50. Approximately 1 in 16 people living with Parkinson’s in the UK are diagnosed before the age of 50, with around 7,000 cases of YOPD diagnosed each year. This accounts for between 10 and 20% of all Parkinson’s cases.
Anyone below the age of 50 can develop Parkinson’s. An individual’s risk is down to environmental risk factors and genetics. Genetics play a significantly more important role in YOPD than in traditional Parkinson’s, with mutations in numerous genes contributing to the early onset of symptoms.
Environmental factors have also been linked to the development of YOPD, including concerns about exposure to pesticides and solvents. However, these are mostly anecdotal and require more research to uncover their validity.
How Is Young-Onset Parkinson’s Different?
The main difference between young-onset and late-onset Parkinson’s is that the former has a longer life expectancy, and those diagnosed with YOPD often have a family history of the disease.
People diagnosed with YOPD might experience:
- Slower progression symptoms: Individuals with YOPD often remain functional and cognitively intact for longer after diagnosis, thanks to their symptoms progressing more slowly.
- Fewer cognitive problems: People with early-onset Parkinson’s may experience fewer frequent challenges with memory and thinking, such as dementia.
- More side effects from medication: Young adults may experience more side effects, such as frequent involuntary body movements, from dopaminergic medications.
- Earlier and more frequent dystonias: Individuals with young-onset Parkinson’s often experience earlier instances of cramping and abnormal postures, such as arching of the foot.
The Importance of Diagnosing Young-Onset Parkinson’s
One of the most significant changes in a person with YOPD’s life will be the social burden their diagnosis comes with. Their careers or relationships may change, or their future plans for children or major life events may become uncertain. They may worry about passing their genes on to their children.
Treatments can be tailored to individuals depending on their age. YOPD is much more likely to be a result of a genetic mutation than late-onset Parkinson’s, so they may be offered genetic testing or counselling. Younger brains can also respond to disease and therapies differently, thanks to their ability to grow and adapt.
It’s important to distinguish between early- and late-onset Parkinson’s so the correct treatment and therapies can be offered in conjunction with life stage and symptom progression.
Can Young-Onset Parkinson’s Be Treated?
Worrying about your life after a YOPD diagnosis is understandable and normal, but the good news is that there are treatments available to many patients. These are mostly similar to those offered to older patients with Parkinson’s disease, but their approaches may differ slightly.
Medication and Surgery
Parkinson’s medication is well-developed and effective in most cases, but younger adults taking it are much more likely to develop dyskinesias (involuntary movements) and dystonias (cramping and abnormal postures). Motor fluctuations are also common for those with YOPD when taking Levodopa.
Your specialist may start with a different medication to mitigate the most significant symptoms, but at some point, Levodopa will be necessary to adequately treat your tremors, slowness and stiffness.
Once your symptoms start to affect your quality of life, surgery may be suggested. This is called deep brain stimulation and helps manage movement symptoms when medications become less effective.
Healthy Diet and Nutrition
A healthy diet has been linked to improved brain health and increased energy levels, with some studies demonstrating the effectiveness of the Mediterranean diet in slowing cognitive decline and supporting neuronal health. This diet consists of fruit, vegetables, legumes, whole grains, olive oil, fish and nuts.
Reducing how many ultra-processed foods are in your diet can reduce inflammation and oxidative stress, both of which are associated with the progression of Parkinson’s. Food can also interact with your medication, so be sure to ask your doctor about the diet you should follow. For example, protein can impact the absorption of Levodopa, altering its effectiveness.
Exercise and Physical Activity
Research has shown that exercise can be a very effective tool in treating both motor and non-motor symptoms, and may even function as a neuroprotective agent. Individuals with YOPD should aim to do aerobic exercise at least five times a week.
Exercises such as yoga, dancing, and Tai Chi can all be beneficial, but the key is to find something you genuinely enjoy so you’ll want to keep doing it. Any exercise that increases your heart rate may help alleviate YOPD symptoms and slow their progression.
Tips for Managing Young-Onset Parkinson’s After Diagnosis
While a Parkinson’s diagnosis can be unexpected and daunting, especially for younger people, there are several ways you can manage symptoms and emotions to boost quality of life.
These include:
Building a Care Team
A care team is essential for those with YOPD. Your GP or Parkinson’s specialist can refer you to other professionals, including movement disorders specialists and neurologists with expertise in movement disorders, to ensure you’re getting the most effective support.
Your care team will be responsible for finding the right medication and therapies to accommodate your progressing symptoms. You can also consider professional care, such as live-in Parkinson’s care, to assist with everyday tasks, maintain your current routine, and boost independence.
Confiding in Loved Ones
An early diagnosis of Parkinson’s affects your friends and family members, too. You might be worried about telling your spouse, children or parents, but the idea of breaking the news is often worse than actually doing it.
Have an open, honest conversation with your loved ones. Tell them as much or as little information as you feel comfortable with. Confiding in loved ones helps you all understand Parkinson’s-related changes and feel secure with what may occur in the future. It also helps create a strong support network, which is essential as symptoms progress.
Telling Your Employer
Most people diagnosed with YOPD are still working and building their careers. You may feel pressured into telling your employer about your diagnosis, but remember that you’re in charge of what you do. The early stages of Parkinson’s can last for years, so there’s often no need to worry about giving up your job straight away.
Seeking Support From the Community
There are several sources of support you can lean on in the community after your diagnosis.
These may include:
- Support groups, where you can meet like-minded people going through similar experiences to you.
- Educational programs that help you better understand your condition and provide effective management techniques for the future.
- Non-profit organisations to connect with people who have been or are going through young-onset Parkinson’s themselves, and support each other.
Genetic Testing
If you have children or are considering growing your family in the future, you might wonder whether they’ll carry a gene related to the onset of Parkinson’s. You can get genetic testing through The Parkinson’s Foundation PD Generation national testing initiative, which offers Parkinson’s-related genetic testing and counselling for free.
Planning for the Future
While it might seem impossible to plan for the future when a YOPD diagnosis has just turned your life upside down, creating a loose plan can alleviate stress and encourage a feeling of security. Familiarise yourself with Parkinson’s and how it affects the body, mind and emotional well-being.
Consider legal, financial and insurance planning to ensure you don’t have to deal with them in the future. Create a plan for your future care needs, as this takes the burden off your loved ones and ensures you receive care exactly as you want it.
Talk to Our Team Today
As the UK’s longest-serving introductory live-in care agency, we have been providing compassionate live-in care to those who need it since 1959 – all from the comfort of their own homes.
Give us a call today on 01293 224 706. Our experienced team is on hand to help from Monday to Friday, 9 am to 5 pm. Alternatively, contact us through our online enquiry form.
