iStock 529114228Living with orthostatic tremor

Many people suffer with tremors, orthostatic tremor, is a rare condition that involves the unintentional rhythmic muscle movement of one or more parts of the body.  It usually occurs when a person is standing upright. It is seen as progressive condition.

Day to day living

On a day to day basis people feel stressed and frustration, but they are not alone. People with orthostatic tremor will often struggle with:

  • standing
  • walking
  • other physical movements
  • exhaustion
  • pain 

Variability

Orthostatic tremor varies from person to person, and sufferers find their own experiences change from time to time - sometimes due to stress or exertion, but sometimes without any reason what so ever. 

Standing

For everyone who has orthostatic tremor, standing, sometimes for just a few seconds, is difficult. Person feel their legs buckle under them. This can result in actual falling. There may be a “freezing up” of the legs and oing day to day things such as queuing, or browsing in shops are difficult and quite likely impossible. People find that the pain will disappear slightly when the person sits or lies down.

Walking

In the early stages of orthostatic tremor, walking may not be affected too much. People may find that they walk quickly and are unable to walk slowly. However as the condition progresses, the walking distance tends to reduce. The actual distance which can be walked will vary, and at worst people can not walk at all.

Exhaustion

People frequently suffer from extreme exhaustion or fatigue. Basic routines such as showering or dressing can take much longer than normal and require a period of rest for recovery. Even after a day of relatively little physical activity, they may feel unable to get out of a chair, or needing sleep.

Pain

Some people will suffer pain when moving and over some said they have some pain when resting, usually in the legs and back.

The effect of stress and emotion

It is recognised that stress makes tremors worst. There is a vicious circle where the tremor gives rise to stress, and then the stress increases the tremor and so on. Feelings such as anger, annoyance, concern, frustration, and even excitement or anticipation can be a problem. Particular difficulty is caused by situations such as a crowded place - nowhere to sit, exertion involved, and the risk of falling.

Frustration

People experience much frustration and dependency on spouses/partners/carers, and often lack of confidence when separated from them. Simple household tasks such as cleaning, cooking, and even making a cup of tea (or carrying it to another room) are either difficult or impossible.

Treatments

There are no known cures for orthostatic tremor, but many people are prescribed drugs to ease the symptoms. The most common one being Clonazepam. However, Pregabalin or Lyrica may be used. 

Mobility aids

People often use a wheelchairs, and some find that a wheelchair is essential for going out and/or moving around at home. Others use them only occasionally – such as at airports. Just over a third of respondents use a scooter. Some people often use scooters or walking sticks.

Misconceptions 

Misconception

Reality

You won’t need to use a wheelchair

 

You will probably need one at least for certain situations, and you are likely to need one (or a scooter) whenever you go out, and possibly when you are at home

You won’t fall

You will do all you can to avoid situations liable to cause you to fall, and you may still fall sometimes

It’s all in the mind

It’s probably all in the brain, but when the brain sends wrong signals to the body via the nervous system, there is not much you can do about it

You can do it if you make the effort

Sometimes you will exert yourself to do something despite the difficulty – but there will be a cost in terms of pain/exhaustion

  

(1)  From Dave Watts website (www.orthostatictremor.co.uk)