New resources available for Young Onset Parkinson’s developed by Mike Ravenek, PhD, through a Parkinson Canada research grant.
Download a printable copy:
- Young Onset Parkinson’s Disease – Advice for Those Newly Diagnosed
- Advice for Physicians from Individuals Living with Young Onset Parkinson’s Disease
Characteristics of Young Onset
Although the average age to develop Parkinson’s is around 60, young onset Parkinson’s (before age 40) occurs in 5-10% of people diagnosed. 20% are under the age of 50. Some challenges in Parkinson’s are universal, regardless of age, but there are a number of issues specific to younger people.
Generally, Parkinson’s proceeds more slowly in younger people. While no two people are the same, someone whose onset age is 40 can expect to work for another 15-20 years on average. For someone with an onset age of 60, the average figure would be half that. These figures are based on the kinds of treatment available today. Future treatment will be even more effective in prolonging the productive life of people with Parkinson’s.
The following characteristics tend to be present in young onset Parkinson’s:
- Young onset Parkinson’s is less likely to lead to dementia and balance problems
- It is more likely to include focal dystonia, which is cramping or abnormal posturing of one part of the body.
- Younger people are more sensitive to the benefits of Parkinson medications, but they tend to experience the dyskinetic side effects of levodopa sooner than older people.
- They also tend to experience dose-related fluctuations at an earlier stage of the disease, including wearing off* and the on-off effect. See Parkinson Canada Information Sheet, Parkinson’s Medications: What you need to know!
Apart from the physical challenges of the disease, people with young onset Parkinson’s face unique issues related to family, career, finances and living long-term with a potentially disabling condition. Talking with other people the same age, with the same condition, can be very helpful.
The key issues for people with young onset Parkinson’s to consider are when to start using medication for symptom relief and what medication to use at the beginning of treatment. Everyone with Parkinson’s is unique and there is no single strategy that applies to everyone.
The decision to delay taking medication requires close monitoring. Each individual needs to consider whether he/she can do what is required at work and home by making changes to accommodate Parkinson’s, for example, using a computer instead of writing with a pen.
When to start taking medication can be decided in consultation with your neurologist or movement disorder specialist.
Here are a few questions you may wish to ask:
- Do drugs lose their effectiveness over time if I start treatment early on?
- What are the benefits of each kind of medication?
- Should I be concerned about behaviours related to taking drugs, such as confusion or compulsive activities (e.g., shopping or gambling)?
- Are medications covered by the provincial drug plan?
- Would a clinical trial be appropriate for me? Can you help me find one?
Since younger people experience an increased incidence of motor fluctuations and dyskinesias, one outcome for treatment, apart from symptom relief, may be to minimize motor fluctuations.
Currently, there are no medications that can slow the progression of Parkinson’s.
It’s important to remember that there are many medications in the Parkinson’s toolbox and more coming every year. A person with Parkinson’s can expect the medications to keep them functioning well for a very long time.
It is estimated that 25-35% of people diagnosed with Parkinson’s are still in the workforce. Some continue full or part-time work for many years. While the diagnosis of Parkinson’s doesn’t necessarily call for early retirement, it does require that you look at how you can best do your job and minimize work-related stress.
In looking at how you do your job, consider the following:
- make an outline of your overall responsibilities
- break each area down into specific tasks
- consider whether or not your symptoms will interfere with your ability to carry out each task
- look for other ways of doing things
- create a schedule that enables you to address difficult or challenging tasks during your peak performance periods
- set aside specific hours for time-consuming efforts like writing reports
The issue of when and what to tell your employer is very much a personal decision depending upon your condition and personality as well as your employment situation. In many provinces, it is a legal requirement for employers to accommodate a person with a disability.
Here are some things to consider:
- Can you keep your symptoms from your employer?
- Are you working on a project that you want to finish before telling your employer?
- Should you tell your employer so that they have adequate time to plan how to accommodate you in the work place?
A diagnosis of Parkinson’s disease affects other family members as well as the person with the disease—spouse, children, teenagers and older parents, will all have issues to deal with. The spouse, now designated as a care partner may be wearing multiple hats as co-breadwinner and parent. Patience, understanding, stamina and creativity will be required from everyone.
The care partner of a young or middle-aged person with Parkinson’s faces particular challenges. It is important for couples to keep an open dialogue about the feelings and experiences of living with a person with Parkinson’s. Eventually the care partner may need to assume some of the tasks and roles in the family that the person with Parkinson’s had previously managed. This should be an on-going negotiation and requires constant dialogue around when to hold back help and when to offer assistance.
Couples who manage best in the face of a chronic illness begin talking together from day one about how the disease is affecting daily operations in the family and what can be done to make things easier. Care partners who manage best are those who learn early to be flexible, state their own changing needs clearly and protect regular blocks of private time to meet those needs over the years. This is not selfish; it is crucial to the well-being of the person with Parkinson’s and the family that the primary caregiver does whatever it takes to maintain his or her own physical mental and emotional health.
Children and teenagers
Young families have to deal with the unique issues of communicating the diagnosis and sharing the daily ups and downs of living with Parkinson’s with young children and teenagers.
Children will absorb the reality of Parkinson’s in the family by osmosis and by processing what they are told directly. Kids seem to intuitively sense a parent’s frustration with tremors or difficulty walking and are capable of both empathy and sympathetic offers of help. Attempting to hide a diagnosis from children may not be the best decision. They know instinctively when something is not quite right in a family. It is better to direct energy used to keep the secret into coping with the demands of maintaining a marriage, making a living and raising a family.
Young children may need reassurance that their mommy or daddy is going to be okay. They may need to hear that both parents will be there for them, that Parkinson’s is not a fatal disease like some cancers, and that it is not contagious like chicken pox. Matter of fact answers to specific questions on a need-to-know basis can help children cope with a parent who has special needs.
What about teenagers? Parents who don’t have Parkinson’s disease can grossly embarrass them! It is important to maintain your role as parent, model or mentor and avoid confiding in your teenage child. Older teens may need reassurance that their lives will go on as planned and that mom or dad does not expect them to be a surrogate caregiver. On the other hand, a mature teenager can get great satisfaction from helping with chores or chauffeuring tasks that may have once been the responsibility of the parent with Parkinson’s. Sometimes adolescents can benefit from professional counselling to help ease the struggle of having a parent who has physical challenges.
Older parents are often shocked to learn that their middle-aged (or younger) child is diagnosed with a disease that is usually associated with the elderly. Their concern may build if this is someone on whom they’re also dependent for emotional or financial support.