New resources available for Young Onset Parkinson’s developed by Mike Ravenek, PhD, through a Parkinson Canada research grant.
Characteristics of Young Onset
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.
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:
Here are some things to consider:
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.
Source: Parkinson Canada, A Manual for People Living with Parkinson’s Disease, Section 16.