April is Parkinson’s disease awareness month; and as a person living with Parkinson’s, I would like to share my experience with fatigue, and REM sleep disorder. These two non-motor symptoms of PD are just as debilitating for me, as all of the classic motor symptoms for which I am treated, including tremor, slowness in movement, rigidity, and balance problems combined. My belief is that fatigue and sleep disorders, especially in young onset Parkinson’s patients are two of the many non-motor symptoms that are poorly understood by neurologists as well as laypersons. Parkinson’s as I experience it is much more than just a movement disorder; it is also a behavioral disorder. I believe many Parkinson’s patients reading this will agree!
About Fatigue and PD
Fatigue in PD patients have attracted very little research interest, and therefore is poorly understood by most neurologists. Despite this, scientists have estimated that approximately half of all PD patients experience fatigue. Fatigue in Parkinson’s patients is not exactly the same type normal people experience. Most people become fatigued after physical or mental exertion. This is simply not the case in my experience, nor is it among many PD patients I have talked to in support groups.
Fatigue in PD is fatigue on a cellular level, meaning the body is working overtime when completing even the most simple tasks, such as brushing your teeth, washing dishes, bathing, or simply answering the phone. I completely identify with this type of fatigue. I wake up with a heavy feeling of tiredness, and I go to bed every day with the same feeling. Sleep or naps do not help; it never leaves me. In addition, Fatigue also causes apathy in PD patients, meaning I/we have difficulty initiating tasks, difficulty following through once at task is initiated, difficulty following complex instructions, and difficulty in multi-tasking. Short-term memory loss is also associated with PD fatigue. Fatigue and sleep disturbances among other PD motor symptoms are what led me to an early retirement. I simply could not “keep up” with the workload.
The ways in which I manage cellular fatigue is to first acknowledge and realize that I cannot do the same things I used to do as efficiently or as timely. I try to get at least eight hours of sleep at night, which is difficult with PD. I pace myself, allowing myself to rest as needed after completing a task. Normal activities are not as doable as before and everything “takes longer than it takes.” By realizing, that everything I do uses double the energy per activity, and “accepting” my limitations, I feel less stress. To date none of the prescribed medications I take for my PD has relieved the insidious fatigue that follows me around every day.
About Sleep Disorders and PD
Sleep disorders or disturbances affect about ninety percent of Parkinson’s patients during the progression of their disease. Getting a good night’s sleep is essential for PD patients. The problem is most PD patients, including myself, have difficulty falling asleep and staying asleep. In 2007, I received a diagnosis of REM sleep disorder, which easily explained the (EDS) excessive daytime sleepiness that I had experienced for many years before my PD diagnosis. Sleep disorders are only one reason why PD patients do not sleep well. Other reasons include having difficulty turning in bed due to rigidness and pain, or having an overactive bladder (common in PD) that wake them to go to the bathroom several times per night. Even with the two medications prescribed for my sleep disorder, Clonazepam and Trazodone, there are many nights I still have on occasion sleepless nights or at best fragmented sleep.
If you are a PD patient, and experiencing overwhelming fatigue and trouble sleeping, let your neurologist or movement disorder’s specialist know! Though sometimes they ignore or brush off these two non- motor symptoms, it is up to us, the PD patient to let them know how miserable these two symptoms are making us feel, so that hopefully more research will be done on these and the other non-motor symptoms of Parkinson’s disease. Remember the old saying “the squeaky wheels get the attention.” This is true. Do not be afraid to make known your most troubling and disabling symptoms of Parkinson’s disease.
Other related articles by this Yahoo Contributor:
First Person: Living Well with Parkinson’s disease
How Parkinson’s disease Affects My Driving
Seven Ways to Maintain a Sharp Mind While Living with Parkinson’s disease