Diagnosis at Age 38: Young-Onset Parkinson's Disease
Diagnosed with Young-Onset Parkinson's disease at age 38, Ken Glowienke of Oswego, Illinois, joined the ten percent of the one million people with Parkinson's disease under age 40. "When you hear Parkinson's you think of an elderly person in a wheelchair, and I thought, ‘Oh my God, is that going to be me?'," said Mr. Glowienke, now 46.
Too Young for Parkinson's'?
After a year of tests to identify the cause of his various symptoms, Mr. Glowienke said that the diagnosis was a double-edged sword. "On the one side, I was very relieved to put a name to it," he said. "On the other side, it was quite a shock."
During that year of testing, Mr. Glowienke said he asked one of his doctors if he could possibly have Parkinson's disease and was told, "No, you're way too young."
Parkinson's Disease is a neurodegenerative brain disorder that affects muscle movement and it is chronic and progressive. People with any type of Parkinson's disease may have tremors, difficulty swallowing, memory loss, and other symptoms.
Young-Onset Parkinson's disease is essentially the same as Parkinson's disease, which typically is diagnosed around age 62. Like many Americans, Mr. Glowienke had only heard of young-onset Parkinson's before when celebrities such as boxer Muhammad Ali and actor Michael J. Fox went public with their own diagnoses -- which they both received in their 30s. Mr. Fox has not only become famous for his struggles with the disease, but also set up the Michael J. Fox Foundation for Parkinson's Research. Mr. Glowienke and his wife Ann created the Focus on a Cure Foundation in Oswego, Illinois after he was diagnosed.
According to the National Parkinson Foundation, there are a few differences for those with Young-Onset Parkinson's disease versus those with Parkinson's disease. The disease progression is slower in Young-Onset Parkinson's and has a lower rate of dementia, but there is an increased rate of dystonia (sustained abnormal postures) and dyskinesias in response to L-DOPA treatment. At any age, the disease severity varies greatly between individuals.
The American Parkinson Disease Association has created the National Young Onset Center solely for the education and support of people diagnosed with the disorder at a relatively young age. Some of the issues for younger people go beyond just the physical symptoms and this organization provides resources to address things like maintaining employment, health, relationships (including those with very young children since people diagnosed in their 30s sometimes have children under age 10 to care for), insurance and much more.
Support for the Family Caregiver
Mr. Glowienke is now on disability from his job as a global marketing and training manager for a medical device company. "I was at the top of my game," he said. "And it took me a long time to get there." But it had become too difficult to travel, and with tremors increasing on his right side, Mr. Glowienke relies on his wife to manage his daily medications, drive him places, and even cut his steak for dinner. His 19 and 20-year old daughters are also able to help out.
With Young-Onset Parkinson's Disease the role of the in home caregiver is also flipped: instead of primarily adult children helping their aging parents, it is often spouses, siblings, and friends who may be of the same age as the patient.
The National Young Onset Center can also connect people who are going through the illness—either families and in home caregivers or those with the disease.
The needs of the caregiver vary greatly, depending on the current symptoms being experienced by the person diagnosed with Young-Onset Parkinson's disease. The National Parkinson Foundation offers personal stories of caregivers, an A-Z list for caregivers, links to local and home care resources, online discussion forums, and an online library of information about Parkinson's disease.
Too Young for Parkinson's'?
After a year of tests to identify the cause of his various symptoms, Mr. Glowienke said that the diagnosis was a double-edged sword. "On the one side, I was very relieved to put a name to it," he said. "On the other side, it was quite a shock."
During that year of testing, Mr. Glowienke said he asked one of his doctors if he could possibly have Parkinson's disease and was told, "No, you're way too young."
Parkinson's Disease is a neurodegenerative brain disorder that affects muscle movement and it is chronic and progressive. People with any type of Parkinson's disease may have tremors, difficulty swallowing, memory loss, and other symptoms.
Young-Onset Parkinson's disease is essentially the same as Parkinson's disease, which typically is diagnosed around age 62. Like many Americans, Mr. Glowienke had only heard of young-onset Parkinson's before when celebrities such as boxer Muhammad Ali and actor Michael J. Fox went public with their own diagnoses -- which they both received in their 30s. Mr. Fox has not only become famous for his struggles with the disease, but also set up the Michael J. Fox Foundation for Parkinson's Research. Mr. Glowienke and his wife Ann created the Focus on a Cure Foundation in Oswego, Illinois after he was diagnosed.
According to the National Parkinson Foundation, there are a few differences for those with Young-Onset Parkinson's disease versus those with Parkinson's disease. The disease progression is slower in Young-Onset Parkinson's and has a lower rate of dementia, but there is an increased rate of dystonia (sustained abnormal postures) and dyskinesias in response to L-DOPA treatment. At any age, the disease severity varies greatly between individuals.
The American Parkinson Disease Association has created the National Young Onset Center solely for the education and support of people diagnosed with the disorder at a relatively young age. Some of the issues for younger people go beyond just the physical symptoms and this organization provides resources to address things like maintaining employment, health, relationships (including those with very young children since people diagnosed in their 30s sometimes have children under age 10 to care for), insurance and much more.
Support for the Family Caregiver
Mr. Glowienke is now on disability from his job as a global marketing and training manager for a medical device company. "I was at the top of my game," he said. "And it took me a long time to get there." But it had become too difficult to travel, and with tremors increasing on his right side, Mr. Glowienke relies on his wife to manage his daily medications, drive him places, and even cut his steak for dinner. His 19 and 20-year old daughters are also able to help out.
With Young-Onset Parkinson's Disease the role of the in home caregiver is also flipped: instead of primarily adult children helping their aging parents, it is often spouses, siblings, and friends who may be of the same age as the patient.
The National Young Onset Center can also connect people who are going through the illness—either families and in home caregivers or those with the disease.
The needs of the caregiver vary greatly, depending on the current symptoms being experienced by the person diagnosed with Young-Onset Parkinson's disease. The National Parkinson Foundation offers personal stories of caregivers, an A-Z list for caregivers, links to local and home care resources, online discussion forums, and an online library of information about Parkinson's disease.