Socially crippling disability


What is a socially crippling disabiity.

When explaining my condition in layman’s terms I use other better known conditions to describe the seriousness of this limiting and socially crippling disability.  There are a few I can think of off the top of my head:  Epilepsy, diabetes, Parkinson’s, Alzheimer’s, bipolar and the two horrid ones I am unlucky to have, Narcolepsy and Cataplexy.    These awful conditions affect a persons entire life and many have no known source or cure.

What is this disability

Well firstly let me tell you that I don’t refer to this as a disability except in formal reference. I call it a condition, it is fairly well controlled but I still have days where even medication doesn’t help

Narcolepsy – a sleeping condition

My description of Narcolepsy is the uncontrollable need to sleep. Then there is the bad side of it, whenever I am sitting comfortably, quietly, warm, in a dark place, watching movies, sitting in waiting rooms, in church, at prize giving, etc….
I just black out. I don’t even feel tired but suddenly I “wake up”. I feel like I have been sleeping for hours but normally I wake suddenly before anyone even notices.

NHS defines Narcolepsy as a long-term (chronic sleep) disorder that disrupts a normal sleeping pattern. Symptoms of narcolepsy can be mild or severe, and include:

•falling asleep suddenly, without warning (known as ‘sleep attacks’) •excessive daytime sleepiness (EDS) •temporary muscle weakness when responding to emotions such as laughter and anger (cataplexy)

Complex Cataplexy

This I only experience when I am extremely tired or emotionally distressed. My legs just sort of buckle under me, I walk but they don’t co-operate. My arms jump, jerks I cannot anticipate or control. Its awful. This is worse than Narcolepsy but doesn’t happen as regularly.

Together with both of these conditions there is the vivid dreams. Dreams that are wild, colourful, creative, imaginative and distinct but very disturbing.

Lancet studies report Cataleptic attacks are a sudden loss of muscle control. This may be just a slight feeling of weakness, such as sagging facial muscles. The head might drop forward or worse, buckling of the knees resulting in total collapse of the person.

In severe cases, the patient can become completed paralysed, lasting for a few seconds to several minutes. During this time, the patient may seem to be unconscious, but can be fully awake and temporarily unable to move. A very frightening situation to be in. These attacks can be brought on by emotions: anger, surprise, fear or even laughter.

How did I get this condition?

I don’t know. I know that I first realised something was wrong during my first pregnancy when I was knitting baby jackets, I would fall asleep while knitting. My sister always said ” you are the only person I know who can knit and sleep at the same time.”

NHS reports that Narcolepsy is a relatively rare condition. The exact number of people who are affected by narcolepsy is unknown because the condition often goes unreported or is not diagnosed correctly.

It is estimated that narcolepsy affects 1 in 2,000 people worldwide, which is the equivalent of 25,000 people in the UK. It is also estimated that around 80% of people with the condition are undiagnosed.

Narcolepsy affects men and women equally. The condition usually begins during adolescence (the teenage years), although it can sometimes start earlier. Cases of narcolepsy that have started later (during middle age) have also been reported.

Narcolepsy does not usually cause any long-term physical health problems, but it can affect a person’s personal and professional life significantly.

Diagnosis:

I visited a doctor who was concerned enough to send me to a neurologist  for an EEG.  This is back in the arc ages before Sleep clinics and sleep study was known of.   All sorts of wires attached to my head,  I was placed in a dark room while the machine I was hooked up to measured whatever it measures.
Straight after the procedure the specialist told me I have Narcolepsy and sent me home.  My doctor was very vague about the diagnosis and just gave me a prescription of medication advised by the specialist.

Treatment:

I was originally given a prescription for a very strong stimulant drug. My medical aid wouldnt pay for these as they were classed as dieting medication. I remember being on diet one time and taking amphetamines and feeling the same effect as the prescribed medication. I was able to buy this over the counter at more than 75% less that I paid for the other medication. So I started on a twenty year course of amphetamines – one a day did the trick, a half extra helped if I was really tired

Technical explanation:

Pathophysiological studies have shown that the disease is caused by the early loss of neurons in the hypothalamus that produce hypocretin, a wakefulness-associated neurotransmitter present in cerebrospinal fluid. The cause of neural loss could be autoimmune since most patients have the HLA DQB1*0602 allele that predisposes individuals to the disorder. Treatment is with stimulant drugs to suppress daytime sleepiness, antidepressants for cataplexy, and gamma hydroxybutyrate for both symptoms. Because narcolepsy is an under-recognised disease, it is important that general practitioners and other primary health-care workers identify abnormal daytime sleepiness early.

Lancet. 2007 Feb 10;369(9560):499-511.  Narcolepsy with cataplexy.  Dauvilliers Y, Arnulf I, Mignot E.  Source  Neurologie, CHU Montpellier Hôpital Gui-de-Chauliac and INSERM U888, Montpellier-France. ydauvilliers@yahoo.fr

How dangerous is Narcolepsy?

Narcolepsy is not dangerous in itself, but it is usually accompanied by Cataplexy. A cataleptic attack could happen at anytime in the home, at work or in leisure time or sport.

A sudden total collapse could be potentially life threatening, if operating or close to running machinery. Friends and work colleagues should be told exactly what to do if an attack does happen.
•Check the person is in safe position to recover away from other dangers, electrical appliances
•Make sure the person is as comfort as possible, checking there is no unnatural limb or body positions
•Allow the person to recover in their own time

Uncontrollable “Sleep Attacks” can also develop into dangerous situations e.g. operating machinery, driving a car or even cooking.

It is your legal obligation to inform the Driver and Vehicle Licensing Agency (DVLA) about this medical condition

The problems created by this disorder can be social and financial. Some people may find a collapsed person disturbing and panic. Getting suitable employment after being diagnosed with this condition would probably be hard to do, as you should always inform an employer for insurance purposes.

Please Note:this information is not medical advice.
Always seek the advice of your doctor if you have a health problem.

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