“Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections, but instantly set about remedying them – every day begin the task anew.” Francis de Sales’ quote could surely be used by all Parkinsonians as they go about their daily tasks of controlling the progress of the disease’s symptoms.
As previously stated, Parkinson’s Disease, a chronic malady, itself is not yet curable. However, significant findings from research help physicians in treating its symptoms. As PD progresses differently in people, the use of certain medications, exercise/stress-controlled (meditation/mental stimulation) activities, positive attitude, diet, and physical, occupational, and speech therapies have proven to be helpful.
Jo-Ann Golec, 71 years of age and active as a volunteer and a spokesperson for the Midwest Chapter of the American Parkinson’s Disease Association, tells us, “I view Parkinson’s as a nuisance and a major inconvenience. I will not let it take over my life. I’ve always been a positive thinker and still am. Attitude is very important with PD. I try to do everything I used to, sometimes a little slower than before, but I manage somehow.
“For me, stress plays a major part in PD,” Golec added. “When I get anxious, I seem to have a minor tremor in my right hand.”
When asked what lifestyle changes Golec had to make to help slow down her PD progression, she answered, “First, everyone should ask their doctor what you can do. You have to start or continue to exercise. I exercise five days a week for one and 1/2 hours each day. I’ve seen a physical therapist and have had good results. Between the correct medication and my exercising, I’m doing quite well.”
To help have the stamina to also take a flexibility class twice a week, Jo-Ann tries to get enough sleep. Alan Mogilner, founder of Sun City’s PD self-help support group, adds, “Muscles lose their tone; you [Parkinson’s patient] have to stay active.”
He also adds, “Get plenty of sleep. It counters the feeling of tiredness.”
Alan and Jerry Duncan, another strong contributor to Sun City’s Parkinson’s Support Group, both agree that, “You need a back-up of staff members [at the hospital] to treat you. [It’s] not good if your doc is the only one on the staff. The hospital must have a Neurology Department.”
Why are doctors with expertise so important to these patients?
“Finding the correct combination of medication is very important,” Golec explained. “If the dose is too high, you can get dyskinesia [that’s when you move involuntarily], and if it’s too low, it won’t help your symptoms.” Dyskinesia can also occur after taking Parkinson’s medication for a lengthy period of time. Indeed, the verdict is still out on the total effectiveness of PD medications due in part to numerous side-effects, as well as the “wearing-off effect.” According to Parkinson’s informational magazine, “Voices”: “Over time, medications for Parkinson’s may be effective for a shorter duration (with much of certain medicines’ effectiveness being lost in the blood stream outside of the brain), resulting in the return of PD symptoms before the next dose is due.”
Woodstock’s Jackie Remington, a former nurse, began with a small amount of meds. She tells the story: “Then I increased [medication] to four times daily and had an incontinence problem followed by foot pain and [taking] foot pills. By last spring I was seeing hallucinations. You think that if one medicine will work, two might work better. Sleep meds did help me to sleep better, but when I had finished my “dopamine” bottle, I could actually physically feel the change in my head.”
Mr. Mogilner agrees with Jackie and states, “[These] Medicines can have side-effects of hallucinations and nightmares.” But Rev. Harvey Feustel from the same S.C. support group feels that Gabapentin has made all the difference in making his dyskinesia disappear overnight.
•Next Edition: Part 4 of 4: Research and Sun City’s Parkinson’s Disease Support Group
