SPRING BAY — The annual Parkinson’s Disease Camp is a time for patients and caregivers to have fun with people going through the same thing.
“The most important thing is to know they are not alone in facing what they are facing,” said Dr. Dron Lamichhane, a neurologist with the OSF HealthCare Illinois Neurological Institute who specializes in movement disorders.
Lamichhane was preparing the grill at Spring Bay American Legion, where the weekend-long camp kicked off Friday. Later in the afternoon, campers moved to the Salvation Army Eagle Crest Camp in Washburn.
The fact that caregivers participate in the camp is the best part of the event for Parkinson’s patient Ned Neuhaus.
“Tonight we will each share our diagnosis stories, and our health-care providers will hear what it’s like to get diagnosed,” said Neuhaus. “It’s a personal level that you never have time to get to during an office visit.”
It’s important for Parkinson’s patients to have a close relationship with their health-care provider because of the unpredictable nature of symptoms, Neuhaus explained. Symptoms are different for everyone, and they tend to come and go.
It’s helpful if the provider can recognize what is normal, and not normal, for each patient.
“It’s phenomenal that they are willing to spend the weekend with us,” Neuhaus said.
The weekend’s activities include campfires, games, entertainment and various outdoor activities, along with informational sessions with health-care professionals. There will also be activities where participants share details of their lives.
“On Saturday night, patients and caregivers will be put in separate rooms to talk,” said Neuhaus. “It’s important for caregivers to get the chance to share their feelings, since the attention is always on the patient.”
A Parkinson’s diagnosis is devastating for everyone involved.
“It’s a hardcore, life-changing diagnosis,” said Neuhaus. “And there’s no way to cure it. You just work to slow it down.”
Founded three years ago, the camp has grown each year. This year 35 patients and caregivers are participating, up from 16 last year. The participants came from as far as Princeton and Rock Island.
Ultimately, the goal of the camp is to help people with Parkinson’s and their caregivers live the best life possible in spite of the disease.
“This is the cool stuff,” said Neuhaus. “It’s people learning how to deal with a tragic event in their life, and leaning on family — because the Parkinson’s community is a family.”
Leslie Renken can be reached at 686-3250 or firstname.lastname@example.org. Follow her on Twitter.com/LeslieRenken, and subscribe to her on Facebook.com/leslie.renken.