Learn About The Risks For A Rare Condition, Affecting Parkinson's Patients And Others With Neurological Diseases

Thursday, March 1, 2012

And Others With Neurological Diseases (NAPS)—Patients who have neurological diseases, such as Parkinson’s disease, are no strangers to the difficulties that having a chronic disease can have on their daily lives. To make matters worse, many maybe experiencing symptomsassociated with the rare condition, neurogenic orthostatic hypotension (Neurogenic OH or NOH). A new survey of these patients and their caregivers revealed that 92 percent of patients have experienced at least one symptom of Neurogenic OH, but only 24 percent have ever heard of the condition. Neurogenic OH occurs in people with an underlying neurologic diseases, such as Parkinson’s, multiple system atrophy (MSA), pure autonomic failure (PAF), nondiabetic autonomic neuropathy and dopamine beta hydroxylase deficiency. Of these patients, it’s estimated that Neurogenic OH affects 20-30 percent of Parkin- son’s patients, 81 percent of MSA patients and nearly all of PAF patients. For people with Neurogenic OH, standing up from sitting or lying position can lead to dizziness, lightheadedness, lack of concentration or vision problems. Many of these symptoms, particularly dizziness, are persistent and may interfere with everyday life. Sometimes the dizziness and lightheadedness can even cause patients to fall unexpectedly, putting them at risk for other injuries. Manyare forced to rely on othersfor extra help. Patients surveyed estimate they spend a significant amount of time, as many ~~ If you or someone you care for has a neurologic disease, you may want to ask a physician whether you’re susceptible to neurogenic orthostatic hypotension, and what to do aboutit. as eight hours per week, managing these symptoms. “So many of these patients are overcome by the vast number of symptoms they experience every day,” says Judy Biedenharn, copresident, SDS/MSA Support Group. “As someone who spent years caring for a patient with MSA who displayed many of the symptomsassociated with NOH, I can say that they impact every aspect of a patient’s life. Things like getting up from bed in the morning or walking up stairs can suddenly become an overwhelming task.” But these patients aren’t alone in their day-to-day frustrations. Caregivers are deeply affected by the symptomstheir loved ones are experiencing. Although caregivers estimate they spend nearly a full day every week (average of 22 hours) caring for a patient, many indicate they fear they are not doing enough to care for their loved ones. For example, 78 percent of caregivers worry that they do not catch every symptom that is being experienced. If you or someone you are caring for has a neurologic disease and experiences any of these symptoms, visit www.SignsofNOH.com to learn more about the condition and download useful tools, such as a symptom assessment questionnaire. Patients and caregivers should talk to their physicians about what other conditions, such as Neurogenic OH, they may be susceptible to because of their neurological condition.

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