The following is an outline of some of the characteristics of YOPD with particular emphasis on the ways in which it differs from later-onset Parkinson's. The most important points to remember as you read through this section are these:
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People with YOPD usually experience a much slower progression of their disease.
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People with YOPD are often able to live a full life after their diagnosis, including a fulltime occupation and other activities such as sports and even, in some cases, giving birth to healthy babies.
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People with YOPD are often better candidates for Deep Brain Stimulation (DBS) should they decide to explore that option.
Note: Please read this information with caution. While there are many potential challenges outlined here, a person with Parkinson's has likely already discovered that the disease is unique to every individual and much of this information may never relate to them.
Compared with older people who are often relieved when the diagnosis is finally made (after fearing that they may, for example, have a brain tumor), younger people may have greater difficulty adjusting to the diagnosis. They are more likely to undertake "doctor shopping", in hopes of finding a different diagnosis, to try unproven alternative treatments, to gather inconsistent information and to even reject future help from the physician who delivered the diagnosis.
Younger people also tend to rate their quality of life as worse than that of older patients of similar disease severity. People with YOPD often cite unusual fatigue as an early symptom.
People with YOPD tend to experience a slower progression of their disease, live longer with their condition, and experience motor fluctuations earlier. People with YOPD may not need treatment initially but will need good medical care throughout their life.
Cognitive changes in YOPD
YOPD is also associated with less cognitive decline and a lower risk of developing dementia, but may include more mood, psychiatric and behavioral symptoms at least until a more advanced age. People with YOPD are at greater risk for developing anxiety, anger and agitation. Depression is common in YOPD and may not only be a symptom of Parkinson's but may actually precede the development Parkinson's in some persons.
Marriage and financial challenges of YOPD
Due to the age of onset, people with YOPD are more likely to have marriage and employment difficulties and to have to retire early due to disability. If the income of the person with YOPD is vital to the family budget, the family may face economic stress. Financial stress on its own has the potential for causing marital strain and when it is coupled with chronic illness there is even more reason for couples affected with YOPD to look after their marriage and themselves.
Career and identity concerns with YOPD
People with YOPD may have concerns relating to employment and careers. As with most people in our society, our careers contribute greatly to feelings of self-worth and identification in addition to our finances.
Making the decision to leave work is complicated by numerous factors including:
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severity of symptoms (including voice volume and quality)
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amount of support in their workplace
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ability (or not) to delegate certain tasks
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need for precise hand movements
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need for manual labour and shift work
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safety issues and levels of fatigue
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benefits, including medication cost coverage, through employment-related extended benefit plans
People with YOPD are affected at an age at which they may expect, perhaps more than at other times, to be sexually active. The appearance of a person with Parkinson's (tremor, rigidity, loss of facial expression, and dyskinesia), can have an impact not only on their self-esteem and their ability to feel sexually attractive, but also on the partner who may find these changes disconcerting.
Sexual function may not form part of a routine neurological examination and the patient may have to be the one to mention it. While some find talking about sexuality challenging, it is important because there may be some things, such as counseling and/or a change in medication dosing or scheduling, that can help.
Menstruation and menopause and YOPD
Younger women may report an increase in symptoms (tremors) or drug side effects when they are premenstrual or menstruating. Perimenopausal women may also have difficulties with increased symptoms from time to time.
Pregnancy and YOPD
Pregnancy may worsen symptoms and may have a negative impact on the course of the illness. There is uncertainty regarding the effects of Parkinson's medications during pregnancy and the drug levels found in breast milk. Deciding to become pregnant when living with YOPD requires very careful consideration.
Source:
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Calne SM, et al. "Psychosocial issues in young-onset Parkinson's disease. Current research and challenges Parkinsonism Related Disorders" (2007), doi:10.1016/j.parkreldis.2007.07.012
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Calne SM, Kumar A. - "Young-onset Parkinson's disease: Practical management of medical issues. Parkinsonism Related Disorders" (2007), doi:10.1016/j.parkreldis.207.07.007
