Parkinson s Disease AGE 50, ALTHOUGH IT SOMETIMES OCCURS IN YOUNGER ADULTS. PARKINSON S DISEASE MOST OFTEN DEVELOPS AFTER

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1 Parkinson s Disease Parkinson s, a neurological disorder, affects a person s nervous system, resulting in involuntary tremors, and difficulty with walking, movement and coordination. This disorder is caused when the nerve cells in the brain that make dopamine which helps control movement are slowly destroyed. Without dopamine, the nerve cells in that part of the brain cannot properly send messages, and this leads to the loss of muscle function. Like dementia, the damage worsens with time. In some cases, Parkinson s disease runs in families. It also may be caused by other disorders (called secondary Parkinsonism) or certain medications. Symptoms may be mild at first. For instance, the person may have a mild tremor, or a slight feeling that one leg or foot is stiff and dragging. As is true for dementia, there is no known cure for Parkinson s disease. Managing Symptoms, Changing Lifestyles Healthcare providers can assist when diagnosing Parkinson s. There is no objective test blood test, brain scan or EEG to make a definitive diagnosis of Parkinson s disease. Instead, a doctor takes a careful medical history and performs a thorough neurological examination, looking in particular for two or more of the cardinal signs to be present. In addition, a relatively new, special imaging technique called DaTscan can help with the diagnosis. Sometimes, a second opinion is helpful. PARKINSON S DISEASE MOST OFTEN DEVELOPS AFTER AGE 50, ALTHOUGH IT SOMETIMES OCCURS IN YOUNGER ADULTS.

2 Lifestyle changes involving nutrition, exercise, physical therapy, etc. may be helpful for people with Parkinson s. For those with severe symptoms, surgery may be an option for some patients. Supporting Caregivers Initially, at least, caregivers of persons with Parkinson s will probably be a spouse, adult child or other family member. These diseases can place a great burden on caregivers; the pressures can be wideranging, involving social, psychological, physical and economic elements of the caregiver s life. So, what can you do if you find yourself acting as a caregiver to an older spouse Intouch or relative? Home Care Services First, you ll want to educate yourself about the disease, its symptoms, treatment, and long-term prognosis. Talk with your loved one s healthcare professionals, and look for additional information and resources. Make sure you know your rights and those of your loved one, and review the person s medical insurance. Seek out a support group for caregivers, and be sure to ask for help from friends and other relatives. Most importantly, take care of yourself. Remember that you have a life outside of caregiving. Eat healthy, exercise, and do things that you enjoy. Coping with Parkinson s Disease: Bob and Margaret Margaret Rodgers calm, put-together appearance is just that, an appearance. I am stressed, I m scared, and I m worried, she says. I am stressed because of the demands caring for someone gives you. I m scared I will have an emergency of my own. I am worried that Bob will fall and hurt himself. Margaret s husband Bob has Parkinson s disease. First diagnosed by Mayo Clinic doctors as supranuclear palsy in1998, Quad-Cities area neurologists later diagnosed him with Parkinson s, and began treating him for that.

3 At first, it was like they gave him a death sentence, she says. Supranuclear Palsy is much worse than Parkinson s, and the person usually dies within six years. First characterized extensively by an English doctor, James Parkinson, in 1817, Parkinson s disease is a chronic, degenerative neurological disorder that affects one in 100 people. Although the average age at onset is 60, people as young as 18 have been diagnosed. Because there is no objective test, or biomarker, for Parkinson s disease, the rate of misdiagnosis, like Bob experienced, can be high. Margaret says they sought other opinions, because she felt she had to learn more about the disease. It is estimated that more than one million people in the United States, and more than five million worldwide, have Parkinson s disease. Many health professionals say that Parkinson s disease itself is not fatal; however, as symptoms worsen, they can cause incidents that result in death. In advanced cases, difficulty swallowing can cause Parkinson s patients to aspirate food into the lungs, leading to pneumonia or other pulmonary conditions. Loss of balance can cause falls that result in serious injuries or death. Coping with the diagnosis was difficult for Margaret. I was so depressed, I cried all the way home from Mayo, she says. I really think I cried for a year straight. I know I grieved for a whole year. Bob was only 55 years old. Margaret says she did not seek the comfort of support groups at first. Instead, she sought information as she could from a variety of sources, and she turned to God. During that first year, I had wonderful dreams that God was with me, she says. He led me down paths I had never been on before. Yes, I cried that first year, and I prayed a lot, but during that first year, I never walked so close to God. I couldn t wait to go to sleep at night to dream.

4 Margaret says she had one dream where she and Bob were looking at property, and they met a man who asked them to walk with him. During the walk, they came upon a man who lived in a tent, but seemed very happy. I came away with the message that if you believe and trust in Him, God will provide, Margaret says. I truly walked hand in hand with Him for a year. I knew it was okay, Bob was still here, and he was still working. Bob continued working until 2003, when his symptoms made it impossible. His fine motor skills had deteriorated to the point where he was having trouble with buttoning his shirt. Living with Parkinson s has been a roller coaster ride of emotions and coping, Margaret says. Doctors have changed medications several times, and her husband has had to stay in nursing facilities several times, for strengthening and conditions related to his Parkinson s. While caring for her husband is a priority, Margaret knows she has to take care of herself. She has heart problems and has undergone heart surgery for blockages. She worries about what will happen if she has an emergency. She has utilized Intouch Adult Day Service s care management program to put a plan in place, if that happens. What has helped her the most, she says, is being able to take Bob to Intouch Adult Day Services. It s funny, she says. I didn t want him to go. I felt like no one could take of him the way I can. I felt so guilty about everything the legal things I had to do. I thought I could do everything. Everyone told me I should go to support groups, to have Bob go to Adult Day. No one could change my mind. It didn t matter what they said. I guess I had to come to terms with it myself. Now, Bob attends Intouch five days a week, and Margaret says she is at peace, knowing he is well cared for, and that she has time for herself.

5 Intouch hosts a support group the second Thursday of each month, from 10:30 11:30 a.m. The group is conducted by Mary Milas, a Trinity Parish Nurse, and group members discuss issues, as well as learn ways to maintain strength and mobility. I have gone to the Intouch Parkinson s support group, but honestly I like the time to myself, she says. I do have a strong support system in the Intouch staff, my neighbors, my friends, my doctors and my attorney. Everyone needs help [to get through this]. Lutheran Social Services of Illinois Can Help Intouch Adult Day Services in Moline includes an Adaptive Service Unit for older adults who suffer from Parkinson s, Alzheimer s or other dementias. The unit is divided into three areas based on individual participants functional abilities. Intouch provides physical, mental and social stimulation to help seniors maintain their independence and gain confidence, as they interact with peers in a wide range of educational and fun activities. (Call: ) provides nonmedical assistance to older adults in their homes who may suffer from Parkinson s, Alzheimer s or other dementias. Trained home care assistants, including CNAs, help individuals with personal care, home care, meal preparation, and other tasks of daily living. Staff also provide companionship and work with clients to enhance wellness. In addition, LSSI s Legacy Corps provides volunteers who offer respite support for veterans and military families affected by Parkinson s. Legacy Corps members do not provide any medical or therapeutic services or tasks. They just provide time off for caregivers to run errands, see to other responsibilities or just relax. (Call: ) Care Coordination Unit in Sterling offers a caregiver support and educational group twice a month. (Call: ) has several locations: Cook County, Chicago Cook County, Des Plaines DeKalb, Kendall, La Salle Counties Fulton County Peoria, Marshall, Stark, Tazewell, Woodford Counties , Ext. 243 Stephenson, Jo Daviess Counties Winnebago, Boone, Ogle Counties LSSI.org/homecare Rock Island, Henry, Mercer Counties