Reporting Non-Motor Symptoms
Long before I knew anything about Parkinson’s I had noted the following symptoms.
May 2002 I developed insomnia after taking Sertraline for only 13 days.
Then my GP gave me Amitriptyline for the insomnia which I took for only 2 days. A couple of months later I had pins and needles in my right arm [paresthesia]. I mentioned it to my GP and he dismissed it with the comment, “Your brain can’t possibly do that”.
October 2002 I saw a Movement Disorder specialist for the first time and as my abnormal involuntary movements continued to worsen in December 2002 I was given Sulpiride which I took for a couple of months.
By January 2004 I noted ‘mouth dribbling’ in my diary. February 2002 I reported this at my neurology appointment. It is there in the handwritten clinical notes, “Complaining of Siallorhea” [excess of saliva] but is omitted from the report.
By May 2003 I was feeling very fatigued. I mentioned this to the neurology assistant as she was filling in my DLA form [Disability Living Allowance]. To my dismay she dismissed this saying something like ‘that won’t count’.
Also May 2003 mentioned to Speech therapist my swallow affected [dysphagia]
June 2003 I was starting to cut down on benzhexol and started getting aches and pains in my back.
Then August 2003 very nasty pain in my chest. No one told me Benzhexol was an aNTI-PARKINSON DRUG. Movement disorder specialist dismissive of chest pain, “ I think it is very unlikely that the pain in your chest is due to Dystonia.” But doesn’t say anything about parkinsonism.
By August 2003 I was also reporting profuse sweating. The assistant was again dismissive, ascribing it to my excessive movements. No mention in the report.
Many Faces of Parkinson’s Disease: Non-Motor Symptoms of Parkinson’s Disease Hye Mi Lee and Seong-Beom Koh J Mov Disord. 2015 May; 8(2): 92–97.
Parkinson’s disease (PD) is considered a multi-systemic neurodegenerative disorder that is characterized by a combination of motor and non-motor symptoms (NMS).
For a long time the main clinical focus in PD has been on the motor symptoms, however, there is increasing recognition that the clinical spectrum of PD is more extensive, also including NMS. NMS of PD comprised a variety of cognitive, neuropsychiatric, sleep, autonomic, and sensory dysfunctions.
Neuroanatomically, NMS may be subdivided into
cortical manifestations (psychosis and cognitive impairment),
basal ganglia symptoms (impulse control disorders, apathy, and restlessness or akathisia),
brainstem symptoms (depression, anxiety, and sleep disorders),
and the peripheral nervous system disturbances [orthostatic hypotension (OH), constipation, pain, and sensory disturbances]
International Multicenter Pilot Study of the First Comprehensive Self-Completed Nonmotor Symptoms Questionnaire for Parkinson’s Disease : The NMSQuest Study K. R. Chaudhuri et al., NONMOTOR SYMPTOMS AND PD Movement Disorders, Vol. 21, No. 7, 2006
Nonmotor symptoms (NMS) of Parkinson’s disease (PD) are not well recognized in clinical practice, either in primary or in secondary care, and are frequently missed during routine consultation
It has been reported that nonmotor symptoms of PD are not identified by neurologists in over 50% of consultations
and sleep disturbance in particular is not recognized in over 40% of PD patients.
Patients (with the aid of caregivers where necessary) completed the questionnaire while waiting to be seen by
the nurse practitioners or physicians. Average time taken to complete the questionnaire was 5 to 7 minutes.
On an average, most patients reported at least 10 different NMS. Three patients reported 20 NMS,
while two had reports of 24 and 27.
Below is a direct link to the Non-Motor Symptoms questionnaire on this website (PDUK). This can easily be cut and pasted this to a one page form to report your NMS symptoms.