Living With Amnesia

It’s normal to become a bit forgetful as you get older. However, memory loss could be a symptom of something more serious and should be checked by a GP.

Memory loss, also called amnesia, occurs when a person loses the ability to remember events and information they would normally be able to recall. This could be something that happened only seconds or minutes ago, or a memorable event that happened in the past. The memory loss may have started suddenly or may have been getting worse over the last year or so.

Memory loss can be distressing, for the person affected as well as for their family. Relatives may fear the worst and assume it's caused by dementia but this often isn't the case.

The following information will tell you:

• what to do if you're worried about memory loss 
• how to tell if it could be caused by dementia 
• the most common causes of memory loss (but don't rely on this to self-diagnose a condition) 
• how to cope with a poor memory 

What to do if you're worried about memory loss

If you're worried because you or someone you care for has lost their memory, see your GP. They'll do an initial assessment and ask questions about symptoms, family history and lifestyle. They may also order a blood test

Memory loss has a wide range of possible causes, depending on the type of memory loss.

Doctors classify memories as either:

• Immediate memories, such as sounds, which are only stored for a few seconds. 
• Short-term or recent memories, such as telephone numbers, which stay in your memory for 15-20 seconds. The brain can store about seven chunks of short-term information at any time. 
• Long-term or remote memories - more permanent memories, which have been reinforced because you've repeatedly gone over them in your mind. 

If your GP thinks that you or your relative needs an assessment for dementia or that there may be another more serious underlying condition, such as brain damage, they'll refer you to a specialist.

Could it be dementia?

If you're reading this because you think your memory problems may be a sign of dementia, rest assured that they probably aren't. A person with dementia will not usually be aware of their memory loss or may deny it.

Your memory loss is likely to be caused by something a lot more common and treatable, such as depression. 

You may be worried that someone you care for has dementia. However, bear in mind that around 40% of people aged over 65 have some kind of memory difficulty, and only 15% will develop dementia each year. 

If your instincts are correct, their denial or lack of awareness of their memory loss can make it hard to convince them to see a GP. 

Signs that someone has dementia

As a general guide:

• Dementia usually occurs in people over the age of 65. 
• Someone with dementia will struggle to remember immediate or recent events, but can still recall events that happened a long time ago. Therefore, if their long-term memory is affected, it probably isn't dementia. 
• The memory loss doesn't happen suddenly but gets gradually worse over time. 

Common causes of memory loss

Generally, GPs find that patients who see them about memory loss are most likely to have: 

• Stress
• Depression
• Anxiety 

Their memory loss is due to poor concentration and not noticing things in the first place because of a lack of interest. Sleeping problems make the memory loss worse.

Your GP may suggest trying antidepressant tablets, If their assumption is correct, these should improve the memory problems as the depression lifts.

An elderly person with memory loss is likely to have depression if they also experience changes in behaviour, such as hoarding or being bad tempered.

Other common causes of memory loss are:

• a head injury, for example after a car accident 
• a stroke that cuts off some of the blood supply to the brain and causes brain tissue to die 

These will cause sudden memory loss, where you either forget events that happened before the trauma (retrograde amnesia), or you forget everything that happened after the trauma (anterograde amnesia). 

Less common causes of memory loss

Less commonly, memory loss can be caused by:

• an underactive thyroid, which means your thyroid gland (found in the neck) does not produce enough hormones 
• certain types of medication, such as sedatives and some treatments for Parkinson's disease 
• long-term alcohol misuse 
• bleeding in the brain, known as subarachnoid haemorrhag
• Vitamin B1 deficiency 
• problems with blood flow to part of the brain, which cause sudden episodes of memory loss that a person cannot recall afterwards (known as transient global amnesia)  
• a stressful or traumatic event that causes someone to block out the memory, leaving them unable to remember important information (known as psychogenic amnesia) 
• a brain tumour. 

Living with amnesia focuses on building habits to follow rather than relying on medical remedies. To cope with his extreme amnesia, Clive Wearing began keeping a journal after the onset of illness in 1985. Since his memory lasts only a few seconds, writing allowed him to retain some record of the past, although he never explicitly remembers doing it. Most entries are brief, guided by his implicit, or habitual, memory of how to write and instinctual awareness of keeping the journal.

Although Wearing's knowledge of specific facts and recent events is nonexistent, his IQ has stayed close its pre-amnesia levels, as with other amnesia patients. For instance, if you ask Wearing for directions to the kitchen, he wouldn't be able to tell you. But if you ask him to make you a cup of tea,  he can walk to the kitchen and do it independently. Because the implicit and semantic memories, which control performance and motor skills, reside in different areas of the brain from episodic memory, intelligence isn't severely affected.

Unfortunately, there is no magic pill or surgery that can fully restore the lost memories of someone with persistent amnesia. Since neurotransmitters play a large role in memory creation, researchers are investigating the potential of isolating them for treatments. With amnesia caused by alcoholism, (Korsakoff's syndrome), vitamin B1 supplements can help stop brain deterioration. Psychotherapy can also aid people with dissociative amnesia by working through the traumatic event. However, most persistent amnesia cases that deal with disease or injury-related brain damage depend on coping, not cures.

Since the bulk of amnesia cases involve anterograde amnesia, treatment focuses on ways to retain new information and build habits through your implicit memory, as we see with Wearing. In this way, you can think of memories as expiring coupons -- either use them or lose them. By integrating memory tools into everyday life, amnesia patients can recall memories as often as possible to try to strengthen them. Amnesiacs manage to remember to use these memory tools by creating habits, or implicit memories, so they instinctively know to check their calendar in the morning for appointments, for instance.

Pocket calendars or PDA's, such as PalmPilots, Blackberries and iPhones, can be helpful since people with amnesia can program reminders, store large amounts of information and take it everywhere. Having simple data like this on hand can increase the patient's sense of independence and lighten the burden on caretakers. In addition, establishing patterns of living are integral for amnesia patients to get on with daily life.

What can I do to improve my memory?

Here are some simple techniques to enhance your memory:

• Give yourself time and keep calm.
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• Keep to a routine. Place everyday items such as car keys, money in the same place and do try to do things in the same order.
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• Write information down as possible, keep paper and pencil or stick it notes near the telephone.
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• If you need to remember to take something with you to an appointment or when you go out leave it somewhere obvious e.g., by the door, or write yourself a big note to remind you and leave it on the door.
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• Get organised. Although most people are used to keep a diary at work, you might find it helpful to have a diary at home to remind you to do something.
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• Use an alarm to help you to remember to do something in the future, for example to take something cooking out of the oven or to make a phone call.
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• Repeat back to someone important information that you need to remember. Not only will this check that you have heard the information correctly, it was also increase the chance that you will be able to recall it later.

Memory and aging: What's normal, what's not

Forgetfulness is a common complaint among older adults. You start to talk about a movie you saw recently when you realize you can’t remember the title. You’re giving directions to your house when you suddenly blank on a familiar street name. You find yourself standing in the middle of the kitchen wondering what you went in there for.

Memory lapses can be frustrating, but most of the time they aren’t cause for concern. Age-related memory changes are not the same thing as dementia.

As we grow older, we experience physiological changes that can cause glitches in brain functions we’ve always taken for granted. It takes longer to learn and recall information. We’re not as quick as we used to be. In fact, we often mistake this slowing of our mental processes for true memory loss. But in most cases, if we give ourselves time, the information will come to mind.

Memory loss is not an inevitable part of the aging process

The brain is capable of producing new brain cells at any age, so significant memory loss is notan inevitable result of aging. But just as it is with muscle strength, you have to use it or lose it. Your lifestyle, health habits, and daily activities have a huge impact on the health of your brain. Whatever your age, there are many ways you can improve your cognitive skills, prevent memory loss, and protect your grey matter.

Furthermore, many mental abilities are largely unaffected by normal aging, such as:

• Your ability to do the things you’ve always done and continue to do often
• The wisdom and knowledge you’ve acquired from life experience
• Your innate common sense
• Your ability to form reasonable arguments and judgments

Normal forgetfulness vs. dementia

For most people, occasional lapses in memory are a normal part of the aging process, not a warning sign of serious mental deterioration or the onset of dementia.

Normal age-related forgetfulness

The following types of memory lapses are normal among older adults and generally are notconsidered warning signs of dementia:

• Ocassionally forgetting where you left things you use regularly, such as glasses or keys.
• Forgetting names of acquaintances or blocking one memory with a similar one, such as calling a grandson by your son’s name.
• Occasionally forgetting an appointment.
• Having trouble remembering what you’ve just read, or the details of a conversation.
• Walking into a room and forgetting why you entered.
• Becoming easily distracted.
• Not quite being able to retrieve information you have “on the tip of your tongue.”

Does your memory loss affect your ability to function?

The primary difference between age-related memory loss and dementia is that the former isn’t disabling. The memory lapses have little impact on your daily performance and ability to do what you want to do.

When memory loss becomes so pervasive and severe that it disrupts your work, hobbies, social activities, and family relationships, you may be experiencing the warning signs of Alzheimer’s disease, or another disorder that causes dementia, or a condition that mimics dementia.

Normal Forgetfulness vs Mild Cognitive Impairment (MCI)

Mild cognitive impairment (MCI) is an intermediate stage between normal age-related cognitive changes and the more serious symptoms that indicate dementia. MCI can involve problems with memory, language, thinking, and judgment that are greater than normal age-related changes, but the line between MCI and normal memory problems is not always a clear one. The difference is often one of degrees. For example, it’s normal as you age to have some problems remembering the names of people. However, it’s not normal to forget the names of your close family and friends and then still be unable to recall them after a period of time.

If you have mild cognitive impairment, you and your family or close friends will likely be aware of the decline in your memory or mental function. But, unlike people with full-blown dementia, you are still able to function in your daily life without relying on others.

While many people with MCI eventually develop Alzheimer's disease or another type of dementia, that doesn’t mean it’s inevitable. Some people with MCI plateau at a relatively mild stage of decline while others even return to normal. The course is difficult to predict, but in general, the greater the degree of memory impairment, especially when accompanied by trouble moving your legs and feet, the greater your risk of developing dementia some time in the future.

Symptoms of mild cognitive impairment (MCI) include:

• Frequently losing or misplacing things
• Frequently forgetting conversations, appointments, or events
• Difficulty remembering the names of new acquaintances
• Difficulty following the flow of a conversation

The same practices that contribute to healthy aging and physical vitality also contribute toa healthy memory

Exercise regularly. Regular exercise boosts brain growth factors and encourages the development of new brain cells. Exercise also reduces the risk for disorders that lead to memory loss, such as diabetes and cardiovascular disease. Exercise also makes a huge difference in managing stress and alleviating anxiety and depression—all of which leads to a healthier brain.

• Stay social. People who don’t have social contact with family and friends are at higher risk for memory problems than people who have strong social ties. Social interaction helps brain function in several ways: it often involves activities that challenge the mind, and it helps ward off stress and depression. So join a book club, reconnect with old friends, or visit the local senior center. Being with other people will help keep you sharp
• Watch what you eat. Eat plenty of fruits and vegetables and drink green tea as these foods contain antioxidants in abundance, which can keep your brain cells from “rusting.” Foods rich in omega-3 fats (such as salmon, tuna, trout, walnuts, and flaxseed) are particularly good for your brain and memory. Eating too many calories, though, can increase your risk of developing memory loss or cognitive impairment.
• Manage stress. Cortisol, the stress hormone, damages the brain over time and can lead to memory problems. But even before that happens, stress or anxiety can cause memory difficulties in the moment. When you’re stressed out or anxious, you’re more likely to suffer memory lapses and have trouble learning or concentrating.
• Get plenty of sleep. Sleep is necessary for memory consolidation, the process of forming and storing new memories so you can retrieve them later. Sleep deprivation reduces the growth of new neurons in the hippocampus and causes problems with memory, concentration, and decision-making. It can even lead to depression—another memory killer.
• Don’t smoke. Smoking heightens the risk of vascular disorders that can cause stroke and constrict arteries that deliver oxygen to the brain.

Living With Obsessive-Compulsive Disorder (OCD)

Obsessive–Compulsive Disorder (OCD) is a serious anxiety-related condition where a person experiences frequent intrusive and unwelcome obsessional thoughts, often followed by repetitive compulsions, impulses or urges.

The illness affects as many as 12 in every 1000 people (1.2% of the population) from young children to adults, regardless of gender or social or cultural background. In fact, it can be so debilitating and disabling that the World Health Organisation (WHO) has actually ranked OCD in the top ten of the most disabling illnesses of any kind, in terms of lost earnings and diminished quality of life.

Based on current estimates for the UK population, there are potentially around 741,504 people living with OCD at any one time.   But it is worth noting that a disproportionately high number, 50% of all these cases, will fall into the severe category, with less than a quarter being classed as mild cases.

OCD presents itself in many guises, and certainly goes far beyond the common perception that OCD is merely hand washing or checking light switches. In general, OCD sufferers experience obsessions which take the form of persistent and uncontrollable thoughts, images, impulses, worries, fears or doubts. They are often intrusive, unwanted, disturbing, significantly interfere with the ability to function on a day-to-day basis as they are incredibly difficult to ignore. People with OCD often realise that their obsessional thoughts are irrational, but they believe the only way to relieve the anxiety caused by them is to perform compulsive behaviours, often to prevent perceived harm happening to themselves or, more often than not, to a loved one.

Compulsions are repetitive physical behaviours and actions or mental thought rituals that are performed over and over again in an attempt to relieve the anxiety caused by the obsessional thoughts.  Avoidance of places or situations to prevent triggering these obsessive thoughts is also considered to be a compulsion. But unfortunately, any relief that the compulsive behaviours provide is only temporary and short lived, and often reinforces the original obsession, creating a gradual worsening cycle of the OCD.

It has traditionally been considered that there are four main categories of OCD. Although there are numerous forms of the illness within each category, typically a person’s OCD will fall into one of the four main categories:

• Checking
• Contamination / Mental Contamination
• Hoarding
• Ruminations / Intrusive Thoughts

For many people with OCD there is often an overinflated sense of responsibility to prevent harm and an over-estimation about the perceived threat that an intrusive thought signifies. It is these factors that help drive the compulsive behaviours, because the person with OCD often feels ultimately responsible for trying to prevent bad things happening.

To some degree OCD-type symptoms are probably experienced, at one time or another, by most people, especially in times of stress where they have succumbed to the seemingly nonsensical need to perform an odd and often unrelated behaviour pattern. However, OCD itself can have a totally devastating impact on a person’s entire life, from education, work and career enhancementto social life and personal relationships.

The key difference that segregates little quirks, often referred to by people as being ‘a bit OCD’, from the actual disorder is when the distressing and unwanted experience of obsessions and compulsions impacts to a significant level upon a person’s everyday functioning – this represents a principal component in the clinical diagnosis of Obsessive–Compulsive Disorder. 

OCD is diagnosed when the obsessions and compulsions:

• Consume excessive amounts of time (approximately an hour or more)
• Cause significant distress and anguish
•  Interfere with daily functioning at home, school or work, including social activities and family life and relationships.

OCD affects males and females equally, and on average begins to affect people during late adolescence for men and during their early twenties for women.

Sufferers often go undiagnosed for many years, partly because of a lack of understanding of the condition by the individual themself and amongst health professionals, and partly because of the intense feelings of embarrassment, guilt and sometimes even shame associated with what is often called the ‘secret illness’. This often leads to delays in diagnosis of the illness and delays in treatment, with a person often waiting an average of 10–15 years between symptoms developing and seeking treatment.

To sufferers and non-sufferers alike, the thoughts and fears related to OCD can often seem profoundly shocking. It must be stressed, however, that they are just thoughts – not fantasies or impulses which will be acted upon.

For someone with OCD, their logical mind always remains functioning, even if their OCD mind is spiralling out of control. Most people with OCD know that their thoughts and behaviour are irrational and senseless, but feel completely incapable of stopping them, often from fear that not completing a particular behaviour will cause harm to a loved one.  No matter how small the risk, the person with OCD will always feel responsible for preventing that bad event from happening.

OCD can also be a chameleon.  For some people the OCD symptoms will remain unchanged, but for others it is not unusual that over time there may be changes to the type of OCD that becomes bothersome. Equally, it is not unusual for symptoms to wax and wane over time if untreated and become a little like a rollercoaster, with the severity increasing during times of stress, perhaps at work, university or within relationships, for example.

Doubt is another characteristic of the OCD sufferer – the French once called OCD ‘la folie de doute’ which translates to ‘the doubting disease’. Doubt is one of the emotions that feeds most obsessive and compulsive behaviour and it is this inability to live with doubt and uncertainty that drives OCD. People with OCD prefer black or white answers for their OCD, rather than being able to accept shades of grey.

Left unchecked and untreated, OCD will mushroom and feed upon itself and can have the power to consume if left unchallenged.

Receiving appropriate treatment, the highest quality standards of care and support and sticking to the treatment plan is the key to long term recovery. 

OCD is indeed a chronic, but also a very treatable medical condition. Most people can learn to stop performing their compulsive rituals and to decrease the intensity of their obsessional thoughts through Cognitive Behavioural Therapy (CBT).  CBT is a form of talking therapy that focuses on the problems a person has in the here and now and helps them explore and understand alternative ways of thinking (the cognitive approach) and to challenge their beliefs through behavioural exercises.

In many cases, CBT alone is highly effective in treating OCD, but for some people a combination of CBT and medication can be effective. Medication may reduce the anxiety enough for a person to start, and eventually succeed in therapy.

Just as a person with some types of diabetes can learn to manage the disease by changing their diet and exercise habits, a person with OCD can learn to manage symptoms so that they won’t interfere with daily functioning.  This allows them to regain a much improved quality of life, but it is also possible, with the right support and treatment to achieve a complete recovery from OCD.

Fortunately, the medical profession is slowly starting to understand and identify OCD symptoms much more effectively, resulting in an improvement in treatment; however, it does still depend on which part of the country you may live in. But, in general, through charities like OCD-UK which help to raise awareness and lobby for improvements in improved access to treatment, the prognosis for people who suffer with OCD is much more hopeful than ever before.

Sciatica

Sciatica is the name given to any sort of pain that is caused by irritation or compression of the sciatic nerve.

The sciatic nerve is the longest nerve in your body. It runs from the back of your pelvis, through your buttocks, and all the way down both legs, ending at your feet.

Signs and symptoms

When the sciatic nerve is compressed or irritated, it can cause pain, numbness and a tingling sensation that radiates from your lower back and travels down one of your legs to your foot and toes.

The pain can range from being mild to very painful, and may be made worse by sneezing, coughing, or sitting for a long period of time.

Some people with sciatica may also experience muscle weakness in the affected leg.

While people with sciatica can also have general back pain,  the pain associated with sciatica usually affects the buttocks and legs much more than the back.

When to see your GP

Most people find their sciatic pain goes away naturally within a few weeks, although some cases can last for a year or more. You should see your GP if your symptoms are severe or persistent, or are getting worse over time.

Your GP will usually be able to confirm a diagnosis of sciatica based on your symptoms and recommend suitable treatments. If necessary, they can refer you to a specialist for further investigation.

You should immediately call 999 for an ambulance if you experience loss of sensation between your legs and around your buttocks and/or loss of bladder or bowel control. Although it is rare, these symptoms can be a sign of a serious condition called cauda equina syndrome.

What causes sciatica?

In the vast majority of cases, sciatica is caused by a herniated or slipped disc. This is when one of the discs that sit between the bones of the spine (the vertebrae) is damaged and presses on the nerves.

Less common causes include spinal stenosis (narrowing of the nerve passages in the spine), a spinal injury or infection, or a growth within the spine (such as a tumour).

You can minimise your risk of developing a slipped disc or back injury that could lead to sciatica by adopting a better posture and lifting techniques at work, as well as stretching before and after exercise, and exercising regularly

How sciatica is treated

Many cases of sciatica will pass in around six weeks without the need for treatment. 

However, a combination of things you can do at home – such as taking over-the-counter painkillers, exercising and using hot or cold packs – may help reduce the symptoms until the condition improves.

In more persistent cases, you may be advised to follow a structured exercise programme under the supervision of a physiotherapist, have injections of anti-inflammatory and painkilling medication into your spine, and/or take stronger painkiller tablets.

In rare cases, surgery may be needed to correct the problem in your spine.

The Sciatic Nerve and Sciatica

Sciatica symptoms occur when the large sciatic nerve is irritated.

The sciatic nerve is the largest single nerve in the body and is composed of individual nerve roots that start by branching out from the spine in the lower back and combine to form the "sciatic nerve."

• The sciatic nerve starts in the lower back at lumbar segment 3 (L3).
• At each level of the lower spine a nerve root exits from the inside of the spine and then comes together to make up the large sciatic nerve.
• The sciatic nerve runs from the lower back, down the back of each leg
• Portions of the sciatic nerve then branch out in each leg to innervate certain parts of the leg - e.g. the buttock, thigh, calf, foot, toes.

The sciatica symptoms (e.g., leg pain, numbness, tingling, weakness, possibly symptoms that radiate into the foot) are different depending on where the nerve is pinched. For example, a lumbar segment 5 (L5) nerve impingement can cause weakness in extension of the big toe and potentially in the ankle.

Pisiformis Syndrome Feels Like Sciatica, But It Isn’t the Same

Piriformis syndrome is a condition that is often confused with sciatica. When the piriformis muscle becomes tight, it can irritate the sciatic nerve. This causes sciatica-like pain, tingling and numbness that often run from the low back to the rear, down the leg and into the foot.

Although the discomfort from piriformis syndrome feels similar to sciatica, the two have different causes. With piriformis problems, the pain is not caused by a compressed nerve root where it exits the spine as occurs with true sciatica.

Correctly identifying the cause of the pain is important because the treatments for each type of pain tend to be very different

.

Truth: Pain From Arthritis or Joint Problems Is Not True Sciatica

The pain from arthritis or other joint problems is actually more common than sciatica, and they are often confused. In reality, sciatica and arthritis are classified as different types of pain. Radicular pain like sciatica is caused by a pinched nerve.

In contrast, referred leg pain from arthritis is dull, achy and often moves around and varies in intensity. Although the leg pain from arthritis may feel similar, it is not truly sciatica. Distinguishing the correct problem is important because the treatments for each type of pain often differ.

Exercise Can Help

• Hamstring stretching. Regardless of the diagnosis, most types of sciatica will benefit from a regular routine of hamstring stretching. The hamstrings are muscles located in the back of the thigh. Overly tight hamstrings increase the stress on the low back and often aggravate or even cause some of the conditions that result in sciatica.
• Exercise correctly. As an adjunct to the above point, doing the right exercises but doing them without proper form can make the exercises relatively ineffective, and possibly may lead to continued or increased pain. It is generally advisable to learn the exercises under the guidance of an appropriately trained health practitioner, such as a physical therapist, chiropractor or physiatrist.
• Aerobic exercises. In addition to specific sciatica exercises, aerobic conditioning may also be encouraged for general body fitness. Walking is an excellent form of exercise for the low back because it is relatively low impact but can provide all the benefits of an aerobic workout. If possible, it is best to gradually progress to doing up to three miles of exercise walking at a brisk pace each day.

Caring for sciatica should be considered part of one's daily living, not just something to add to the routine at the end of the day. In addition to an exercise routine, patients with sciatica should minimize everyday stress on the lower back, including using appropriate ergonomics while lifting, maintaining good posture, making sure the lower back is supported while sitting, and avoiding sitting or standing for long periods of time.

Before beginning any exercise program, patients should see a health professional to get a correct diagnosis for their pain and to rule out any more serious problems. The proper exercises differ based on the condition that is causing the sciatic pain, so patients should not try to self-treat their sciatica before consulting a health professional.

Tips On Managing Sciatica

Treat the pain from sciatica at home. The Mayo Clinic recommends steps like taking over-the-counter painkillers, using hot and cold packs, and stretching as well as exercising. Medline Plus recommends icing the affected area for two or three days after the development of pain and then using heat. Changing the position you sleep in may also help: Medline Plus recommends sleeping in the fetal position with a pillow placed between the knees, or on the back with a pillow under the knees.

Perform physical therapy exercises as recommended by your doctor or physical therapist; this is often recommended in the case of a herniated disk. Physical therapy can help strengthen back muscles and increase flexibility so that the condition is less likely to recur, according to the Mayo Clinic.

Take prescription medications as recommended by your doctor in order to clear up pain from sciatica. According to the Mayo Clinic, these include anti-inflammatory drugs, muscle relaxers, prescription painkillers, and tricyclic antidepressants as well as anticonvulsant medications. Corticosteroid injections may also be recommended.

Keep the position of your back in mind while reaching and lifting. When you lift, lift with your legs, keeping your back straight, feet spread and stomach muscles tight. Don't twist as you lift. Hold objects close to your body and don't lift them higher than your waist. Reaching up for an object can strain the back. Raise yourself up as close to the object as you can, via a stepladder or chair.

Sleep on a comfortable mattress. For some, this means a firm mattress, but for others this means a soft mattress. What's important is that you are comfortable, you don't wake up sore and stiff and are able to maintain good sleeping posture.

Sit for short periods in an ergonomic chair that has lumbar support since sitting for long periods of time can be hard on the back. Don't cross your legs. Keep your feet flat on the floor. When driving, use a lumbar support and move the seat close to the steering wheel so that you don't slouch or put pressure on your back.

Living With Tourette's Syndrome (TS)

John Davidson appeared in a BBC documentary in 1989 about his daily battle with Tourette's syndrome. Here, he talks about how he copes with the condition, growing up with Tourette's and building self-confidence.

"John’s Not Mad" was a BBC documentary featuring John as a lonely 16-year-old boy with such severe Tourette's Syndrome(TS) that he was too scared to venture outside and face people.

Viewers saw how his uncontrollable (sometimes foul-mouthed) outbursts and violent body jerks prevented him from leading a normal life. The documentary highlighted a much-misunderstood condition, which affects 300,000 people in the UK.

“The BBC documentary changed my life tremendously due to the public awareness it created,” says John, a community worker from Galashiels, Scotland, and a TS spokesman.

“I felt that people realised I wasn't insane, and that I was a decent kid who unfortunately had this misunderstood condition. I then had the confidence to walk down the street without feeling I was being watched and laughed at. 

“Most importantly, it raised awareness of TS and has encouraged other people to get diagnosed. It's also helped me make many friends.”

John has vocal tics, including coprolalia (unintentionally using bad language). Coprolalia is one of the most well-known aspects of TS but it affects only 10% of sufferers.

TS is a condition of the nervous system, and there's no cure. Symptoms usually appear in childhood. Some symptoms disappear by the age of 18 but the condition stays throughout the person's life.

TS causes involuntary movements and involuntary noises, called tics. Vocal tics can range from coughing or throat-clearing to the involuntary utterance of whole words or phrases. During a tic, a person is fully aware of their actions but can't stop, though they may be able to suppress them temporarily. 

People with TS are of usual intelligence, but may have educational difficulties due to poor concentration. If they're not given appropriate help, they can become frustrated, withdrawn or do poorly at school.

“Growing up with TS was very difficult,” says John. “I believed I was different from everyone else because of the involuntary symptoms. 

“I often felt unloved and unwanted by family and friends. I felt that I was a hindrance to the rest of my family.”

Many people with TS lead normal lives. Others find that the condition, and people's prejudices about it, make it difficult to get jobs or form relationships.

“I was very self-conscious about my condition, especially when all I wanted was to fit in with my peers,” says John. “I was often paranoid about everything and everyone around me. At times I felt very alone.”

'Be open and honest about how you feel in different situations'

John Davidson

Coping mechanisms

Although public acceptance has made John feel much more comfortable in society than he did when he was 15, day-to-day life is still very difficult.

“My self-confidence goes up and down a lot. It tends to increase when I have good friends and lots of support around me, especially from close family,” he says.

“Having constant reassurance helps tremendously, as does getting lots of positive feedback about achievements.”

John generally has fewer tics now than when he was a teenager. But certain social situations, such as going to the supermarket, still make the tics worse.

He says that each person with TS must develop their own ways of coping, with the help of medical experts.

“At school I used to take 10 minutes time out from the class when I felt stressed and ‘ticcy’. Sitting next to a door helped me in the classroom setting as I could easily escape if I needed to,” he says.

“I often sit tapping my fingers and tapping my foot, which helps to alleviate the tics and gives me something to concentrate on. 

"In my current work situation I find it helpful to have somewhere quiet to go and gather myself.” 

John does relaxation exercises at home, attends cognitive therapy and takes medication to lessen the tics. But he knows that Tourette's will always be part of his life.

He says the best and most effective coping mechanism is understanding and patience from others around you.

“Be open and honest about how you feel in different situations. It helps others to understand what you're going through,” he says.

The causes

Tics come and go over time, varying in type, frequency, location, and severity.  The first symptoms usually occur in the head and neck area and may progress to include muscles of the trunk and extremities. Motor tics generally precede the development of vocal tics and simple tics often precede complex tics.  Most patients experience peak tic severity before the mid-teen years with improvement for the majority of patients in the late teen years and early adulthood. Approximately 10-15 percent of those affected have a progressive or disabling course that lasts into adulthood. 

Although the cause of TS is unknown, current research points to abnormalities in certain brain regions (including the basal ganglia, frontal lobes, and cortex), the circuits that interconnect these regions, and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. Given the often complex presentation of TS, the cause of the disorder is likely to be equally complex.

How it is diagnosed

TS is a diagnosis that doctors make after verifying that the patient has had both motor and vocal tics for at least 1 year.  The existence of other neurological or psychiatric conditions can also help doctors arrive at a diagnosis.  Common tics are not often misdiagnosed by knowledgeable clinicians.  However, atypical symptoms or atypical presentations (for example, onset of symptoms in adulthood) may require specific specialty expertise for diagnosis. There are no blood, laboratory, or imaging tests needed for diagnosis.  In rare cases, neuroimaging studies, such as magnetic resonance imaging (MRI) or computerized tomography (CT),   electroencephalogram (EEG) studies, or certain blood tests may be used to rule out other conditions that might be confused with TS when the history or clinical examination is atypical. 

It is not uncommon for patients to obtain a formal diagnosis of TS only after symptoms have been present for some time. The reasons for this are many.  For families and physicians unfamiliar with TS, mild and even moderate tic symptoms may be considered inconsequential, part of a developmental phase, or the result of another condition.  For example, parents may think that eye blinking is related to vision problems or that sniffing is related to seasonal allergies.  Many patients are self-diagnosed after they, their parents, other relatives, or friends read or hear about TS from others. 

How is TS treated

Because tic symptoms often do not cause impairment, the majority of people with TS require no medication for tic suppression. However, effective medications are available for those whose symptoms interfere with functioning. Neuroleptics (drugs that may be used to treat psychotic and non-psychotic disorders) are the most consistently useful medications for tic suppression; a number are available but some are more effective than others (for example, haloperidol and pimozide).

Unfortunately, there is no one medication that is helpful to all people with TS, nor does any medication completely eliminate symptoms.  In addition, all medications have side effects. Many neuroleptic side effects can be managed by initiating treatment slowly and reducing the dose when side effects occur. The most common side effects of neuroleptics include sedation, weight gain, and cognitive dulling.  Neurological side effects such as tremor, dystonic reactions (twisting movements or postures), parkinsonian-like symptoms, and other dyskinetic (involuntary) movements are less common and are readily managed with dose reduction.

Discontinuing neuroleptics after long-term use must be done slowly to avoid rebound increases in tics and withdrawal dyskinesias. One form of dyskinesia called tardive dyskinesia is a movement disorder distinct from TS that may result from the chronic use of neuroleptics. The risk of this side effect can be reduced by using lower doses of neuroleptics for shorter periods of time. 

Other medications may also be useful for reducing tic severity, but most have not been as extensively studied or shown to be as consistently useful as neuroleptics.  Additional medications with demonstrated efficacy include alpha-adrenergic agonists such as clonidine and guanfacine.  These medications are used primarily for hypertension but are also used in the treatment of tics. The most common side effect from these medications that precludes their use is sedation. However, given the lower side effect risk associated with these medications, they are often used as first-line agents before proceeding to treatment with neuroleptics.

Effective medications are also available to treat some of the associated neurobehavioral disorders that can occur in patients with TS.  Recent research shows that stimulant medications such as methylphenidate and dextroamphetamine can lessen ADHD symptoms in people with TS without causing tics to become more severe.  However, the product labeling for stimulants currently contraindicates the use of these drugs in children with tics/TS and those with a family history of tics. Scientists hope that future studies will include a thorough discussion of the risks and benefits of stimulants in those with TS or a family history of TS and will clarify this issue.  For obsessive-compulsive symptoms that significantly disrupt daily functioning, the serotonin reuptake inhibitors (clomipramine, fluoxetine, fluvoxamine, paroxetine, and sertraline) have been proven effective in some patients. 

Behavioral treatments such as awareness training and competing response training can also be used to reduce tics.  A recent NIH-funded, multi-center randomized control trial called Cognitive Behavioral Intervention for Tics,  or CBIT,  showed that training to voluntarily move in response to a premonitory urge can reduce tic symptoms.   Other behavioral therapies, such as biofeedback or supportive therapy, have not been shown to reduce tic symptoms.  However, supportive therapy can help a person with TS better cope with the disorder and deal with the secondary social and emotional problems that sometimes occur. 

Is it inherited

Evidence from twin and family studies suggests that TS is an inherited disorder. Although early family studies suggested an autosomal dominant mode of inheritance (an autosomal dominant disorder is one in which only one copy of the defective gene, inherited from one parent, is necessary to produce the disorder), more recent studies suggest that the pattern of inheritance is much more complex.  Although there may be a few genes with substantial effects, it is also possible that many genes with smaller effects and environmental factors may play a role in the development of TS.

Genetic studies also suggest that some forms of ADHD and OCD are genetically related to TS, but there is less evidence for a genetic relationship between TS and other neurobehavioral problems that commonly co-occur with TS. It is important for families to understand that genetic predisposition may not necessarily result in full-blown TS; instead, it may express itself as a milder tic disorder or as obsessive-compulsive behaviors. It is also possible that the gene-carrying offspring will not develop any TS symptoms.

The gender of the person also plays an important role in TS gene expression. At-risk males are more likely to have tics and at-risk females are more likely to have obsessive-compulsive symptoms.

Genetic counseling of individuals with TS should include a full review of all potentially hereditary conditions in the family.

What is the prognosis 

Although there is no cure for TS, the condition in many individuals improves in the late teens and early 20s. As a result, some may actually become symptom-free or no longer need medication for tic suppression. Although the disorder is generally lifelong and chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence. Although tic symptoms tend to decrease with age, it is possible that neurobehavioral disorders such as ADHD, OCD, depression, generalized anxiety, panic attacks, and mood swings can persist and cause impairment in adult life.

Research

Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), is responsible for supporting and conducting research on the brain and nervous system.  The NINDS and other NIH components, such as the National Institute of Mental Health, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute on Drug Abuse, and the National Institute on Deafness and Other Communication Disorders, support research of relevance to TS, either at NIH laboratories or through grants to major research institutions across the country.  Another component of the Department of Health and Human Services, the Centers for Disease Control and Prevention, funds professional education programs as well as TS research.

Knowledge about TS comes from studies across a number of medical and scientific disciplines, including genetics, neuroimaging, neuropathology, clinical trials (medication and non-medication), epidemiology, neurophysiology, neuroimmunology, and descriptive/diagnostic clinical science.

Genetic studies. Currently, NIH-funded investigators are conducting a variety of large-scale genetic studies. Rapid advances in the technology of gene discovery will allow for genome-wide screening approaches in TS, and finding a gene or genes for TS would be a major step toward understanding genetic risk factors. In addition, understanding the genetics of TS genes may strengthen clinical diagnosis, improve genetic counseling, lead to the clarification of pathophysiology, and provide clues for more effective therapies.

Neuroimaging studies.  Advances in imaging technology and an increase in trained investigators have led to an increasing use of novel and powerful techniques to identify brain regions, circuitry, and neurochemical factors important in TS and related conditions.

Neuropathology.  There has been an increase in the number and quality of donated postmortem brains from TS patients available for research purposes.  This increase, coupled with advances in neuropathological techniques, has led to initial findings with implications for neuroimaging studies and animal models of TS.

Clinical trials.  A number of clinical trials in TS have recently been completed or are currently underway.  These include studies of stimulant treatment of ADHD in TS and behavioral treatments for reducing tic severity in children and adults. Smaller trials of novel approaches to treatment such as dopamine agonists and glutamatergic medications also show promise.

Epidemiology and clinical science.  Careful epidemiological studies now estimate the prevalence of TS to be substantially higher than previously thought with a wider range of clinical severity. Furthermore, clinical studies are providing new findings regarding TS and co-existing conditions.  These include subtyping studies of TS and OCD, an examination of the link between ADHD and learning problems in children with TS, a new appreciation of sensory tics, and the role of co-existing disorders in rage attacks. One of the most important and controversial areas of TS science involves the relationship between TS and autoimmune brain injury associated with group A beta-hemolytic streptococcal infections or other infectious processes. There are a number of epidemiological and clinical investigations currently underway in this intriguing area.