MANAGING PARKINSON'S DISEASE AT EVERY STAGE
Young Onset Parkinson's Disease (YOPD)
An earlier arrival of symptoms
About 8% to 10% of patients with Parkinson's disease have symptoms that appear before the age of 40.22 People who develop symptoms of the disease between the ages of 20 through 40 are said to have "Young Onset Parkinson's Disease (YOPD)."4,21
Most of the cardinal symptoms of Parkinson's disease—such as bradykinesia, difficulty with walking, and rigidity—are seen in people of all ages. But one study found a key difference between young onset Parkinson's disease and Parkinson's disease in older patients: tremor is seen somewhat less often in younger patients than in those diagnosed in their 60s or later.4
Muscle spasms that cause abnormal postures, such as arching of the foot (called dystonia) are more common in the young-onset patient. These often appear before other, more typical symptoms of Parkinson's disease appear.21 However, patients with Young Onset Parkinson's Disease are less likely to have dementia.4
Treatment-related complications in Young Onset Parkinson's Disease
Movement disorders and other treatment-related complications due to levodopa are more common in younger Parkinson's disease patients, not because they are different than other Parkinson's disease patients but simply because these patients are on levodopa therapy longer.4 Levodopa is still the most effective treatment for Parkinson's disease; however, the motor complications associated with long-term levodopa therapy can be disabling. But if you have Young Onset Parkinson's Disease, your doctor may want to delay the use of this medicine or use the lowest dose possible to avoid these complications.24 Using a dopamine agonist such as MIRAPEX may be one effective way to do that.21
As with older onset Parkinson's disease, how fast and how quickly Young Onset Parkinson's Disease progresses can vary greatly among individuals. Most clinical symptoms are the same at whatever age Parkinson's disease develops. But management may be very different for young-onset patients because of the concerns that come from having these symptoms at a young age.21
Getting treatment for Young Onset Parkinson's Disease
If you or someone you care for has Young Onset Parkinson's, it's a good idea to find a doctor who has experience treating these patients. This way, the doctor will be familiar with the best ways to achieve long-term control of symptoms. The doctor will also be able to offer strategies and techniques to help the patient keep the highest level of independence possible for the longest possible time.
Psychological and social issues
Getting a diagnosis of a chronic disorder like Parkinson's disease is tough at any age. But it can be especially difficult for a teenager or young adult, who still has their whole life ahead of them.25 They will be concerned about their future, and whether or not they'll be able to ever have a family, a successful career, or a fulfilling life in general. They may also be frightened by the idea of a lifetime of increasing medical bills and decreasing abilities.
Read more about special issues related to YOPD:
Effects on the family
After getting the diagnosis, patients with Young Onset Parkinson's Disease may have many questions. The ongoing need for lifestyle changes can also affect relationships between the different family members. Therefore, in families who experience Young Onset Parkinson's Disease, it can be extra helpful to consider family counseling to make sure any issues are dealt with quickly and thoroughly.
People who develop Young Onset Parkinson's Disease who are raising children may face some additional challenges. Children may ask questions about the condition. Parents with Young Onset Parkinson's Disease should prepare simple, reassuring and honest answers to any questions they may have. Many national Parkinson's disease organizations have materials that can help families learn about Parkinson's disease together.
Career issues
The good news is that medicines such as levodopa and MIRAPEX have greatly improved treatment and delayed difficulties for the majority of patients with Parkinson's disease. All people with Parkinson's disease, but especially those with Young Onset Parkinson's Disease, need to remember that Parkinson's disease progresses slowly over many years. If they begin treatment and stay with it, they will most likely have many years of work ahead of them. In later years, the person will have to decide just how long they want to continue working and when to apply for medical disability.22
Effects on sexuality & intimacy
In Young Onset Parkinson's Disease, some symptoms can reduce a person's interest in sex and reduce the degree of sexual activity in people with Parkinson's disease. In addition, the patient's sexual partner also may experience fatigue as they struggle with the responsibility of caring for their partner. They may have neither the energy for nor any interest in sexual activity. Also, some symptoms may cause the person with Parkinson's disease to appear less physically attractive.26 If you have Young Onset Parkinson's Disease, your doctor can refer you to other specialists, such as a urologist, gynecologist, or sex therapist, to help identify issues affecting sexuality and offer practical solutions.
For more information about Young Onset Parkinson's Disease, and how to get help with coping, visit www.youngparkinsons.org/, a Web site devoted to the needs of YOPD patients and their care partners.
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