Living with Parkinson’s – Assistive Equipment
17th July 2014
What is Parkinson’s?
Parkinson’s disease is a degenerative disorder that results from the slow and gradual death of brain neurons. As the area of the brain affected by the disease plays an important role in controlling movement, people gradually develop rigid, jerky uncontrollable movements. For example, raising a cup to the lips with precision and flexibility becomes difficult. Nowadays, the available treatments can reduce symptoms and slow the progression of the disease quite effectively, and it is possible to live with Parkinson’s for several years.
Parkinson’s And Parkinsonism
There are around 127,000 people affected with Parkinson’s in the UK. The disease usually appears around the age of 50 years, but it can also affect younger people. One in 20 sufferers are under the age of 40. At first, the symptoms can be confused with the normal aging process, but gradually as they worsen, the diagnosis becomes more obvious. When the first symptoms appear, it is believed that 60% to 80% of the nerve cells of the substantia nigra, or “black substance” are already destroyed. Thus, when the symptoms appear, the disease has on average five to ten years of evolution.
At the heart of the disease is an imbalance of dopamine. Nerve cells affected by Parkinson’s disease are in an area called “black substance”, in the center of the brain. Cells in this area produce dopamine, a chemical messenger that helps control movement, but also vital in feeling pleasure and desire. Cell death in the substantia nigra creates a lack of dopamine. Normally, control of movement results from a delicate balance between the amount of dopamine and acetylcholine, another chemical messenger. If the balance is upset, tremors, stiffness and loss of coordination follow. Conversely, an excess of dopamine could be the cause of symptoms associated with schizophrenia.
Symptoms similar to Parkinson’s disease can occur in individuals with Parkinsonism. In fact, Parkinson’s disease accounts for 85% of a set of “Parkinsonism” diseases. The latter is also reflected in movement disorders but the physiology of the disease differs. Parkinsonian syndrome is usually caused by an imbalance in the cholinergic system rather than a deficiency of dopamine. Overall, the differences are visible and the treatments are not the same. Among the conditions that can trigger a Parkinsonian syndrome include damage to the brain following trauma or tumour, small strokes and consumption of drugs used to treat nausea, epilepsy, hypertension or psychiatric disorders. Various uncommon neurological diseases also manifest as Parkinsonian syndrome.
What are the Causes of Parkinson’s?
Although the cells of the brain that control the movements (motor neurons) are located in the upper part of the brain, they need a chemical called dopamine, which is produced in a region of the brain called the basal ganglia. In people with Parkinson’s disease, the cells that produce dopamine in the brain stem are destroyed. In most cases, the cause of this destruction is unknown. Researchers know that for the majority of people with Parkinson’s disease, a protein called synuclein accumulates to form protein deposits called Lewi body.
Researchers believe that Parkinson’s disease is a complication of the accumulation of proteins in the brain. Secondary Parkinsonism is due to a condition, e.g. disease of the nervous system, heart disease, brain tumour, viral infection or a chemical that interferes with the activity of cells that produce dopamine in the brain stem, or induces lesions in these cells. The most common cause is a side effect of prescribed medicines to treat other diseases
Research has also recently discovered a number of genetic mutations, which suggests that Parkinson’s disease is more common in some families. However, a large study of twins conducted in the United States indicates that the environment plays a more important role than heredity. The current consensus is that genetic factors are predominant only in cases where the disease occurs before the age of 50.
How is Parkinson’s Diagnosed?
The diagnosis of Parkinson’s disease is complex and requires the expertise of a specialist to rule out other possible explanations for observed symptoms, and specify whether they are due to Parkinson’s disease itself or another Parkinsonian syndrome. Contingent delay in diagnosis and initiation of treatment does not change the subsequent evolution of the disease.
In all cases it is advisable to consult a specialist in neurology to confirm the diagnosis. Diagnosis is primarily clinical, based on examination of the symptoms presented by the patient and taking into account their general condition. MRI scans of the brain may show no anomalies, but in some cases, sophisticated imaging techniques can help to confirm the clinical diagnosis. During examination, as well as examination to look for any of the typical signs of Parkinson’s, the specialist will also look for any other signs that may indicate a different diagnosis. This is because there are other conditions that can cause similar symptoms to Parkinson’s.
The main criteria in the diagnosis of Parkinson’s is the presence of symptoms of the illness: slow movements (bradykinesia), rigidity (stiffness) and muscle specific resting tremor (contrary to popular belief, about half of Parkinson’s individuals do not shake), changes in handwriting, walking – particularly a loss of the normal swing in the arms or in stride length, finger tremors and fatigue. The specialist will check for changes in speech, particularly softness or a lack of volume, and difficulty in changing facial expressions. Constipation, depression, weight loss and restless legs are also factors to be considered. Symptoms may also be exacerbated by illness and/or stress.
After examination, the specialist may suggest medication for Parkinson’s, as this can be a way of testing to ascertain if the condition is definitely present. If the symptoms improve after taking medication for a few weeks or months, the specialist may confirm a Parkinson’s diagnosis. However, some people with other forms of Parkinsonism will also respond well to these drugs. The specialist may recommend a scan to help make a diagnosis. A scan alone cannot make a definite diagnosis of Parkinson’s, so they are not commonly used.
How Does Parkinson’s Progress?
Each person with Parkinson’s disease is unique and, as such, subject to different symptoms. However, since it is a progressive disease, existing symptoms will worsen and new symptoms may occur. There is a greater investment in time and effort needed to accomplish daily activities, such as bathing and dressing. Tremors which were limited to one side of the body may now occur on both sides, or there may be a change in the ability to walk; from slow, to dragging the feet. The intensity of the symptoms may vary from day to day. It may be necessary to take medication at shorter intervals, increase the dose or take a combination of several drugs to control symptoms. It is important to be aware of any changes that occur. Friends and family members may notice changes. For example, they may find it difficult to understand the speech of the affected person.
It is difficult to assess the speed with which Parkinson’s evolves in the individual. It is possible that degeneration occurs faster in people who are older at the onset of symptoms. It is also possible that Parkinson’s progresses more slowly when the main symptom is the occurrence of tremor, particularly if the tremors start on a single side. At present, there is no known cure for Parkinson’s disease. However, many motor symptoms are treated with medication used mainly to compensate for the lack of dopamine, or mimic the effects of dopamine in the brain. The drugs can ameliorate the symptoms, but without slowing the progression of the disease. Non-motor symptoms are treated with other types of drugs. In the advanced stages of Parkinson’s, additional symptoms can be attributed to the combination of two factors: the progression of the disease and taking prescribed medications.
Types of Parkinson’s and Parkinsonism
Idiopathic Parkinson’s represents the vast majority of Parkinson’s diagnosis. It is defined as a class of movement disorders that have similar symptoms and features. With Idiopathic Parkinson’s the cause of the disease is unknown, unlike other forms where the cause is either suspected or known.
Vascular Parkinsonism is an atypical form of Parkinsonism. The most likely causes are diabetes, hypertension, cardiac disease and strokes. The distinction between vascular Parkinsonism and Parkinson’s disease can be difficult; olfactory tests may show better responses when the cause is vascular. Symptoms include difficulty with speaking, swallowing and facial expressions. Incontinence, confused thoughts and memories, and cognitive problems may also occur.
Around 7% of people develop Parkinsonism symptoms after they receive treatment with a specific medication. Some medications used to treat psychotic disorders are known to inhibit dopamine, an essential chemical produced by the brain that facilitates coordinated movement. Dopamine suppressing drugs, known as neuroleptics, are thought to be the main factor in the onset of drug-included Parkinsonism. Symptoms are most often static, and appear with a drop in dopamine levels. Symptoms generally recede within a short period of stopping the medication that triggered the dopamine block.
Dementia With Lewy Bodies
Dementia With Lewy Bodies is a neurological disease that affects the cognitive function of the individual. It develops due to deposits of protein conglomerates (known as Lewy bodies) in brain cells, thus disrupting the normal function of the brain. Dementia with Lewy bodies shares similar traits with Alzheimer’s or Parkinson’s, but it is distinguished by a generally more rapid and marked deterioration of mental faculties. A progressive condition which is characterised by hallucinations, stiffness, slow movement and tremor, the symptoms can worsen as the disease progress, and there is currently no cure. As with other neurodegenerative dementias, it affects the elderly.
What are the Symptoms of Parkinson’s?
Due to its complex nature, Parkinson’s affects each individual in different ways, and each experience is unique. All of the symptoms will not be experienced by everyone, and the order in which symptoms appear, and their progression, also varies from person to person. In most cases, the first symptom is uncontrollable tremors in one hand, followed by tremors in the head and legs, occurring especially at rest or during stress. However, around 25% of patients show no signs of tremor. There is usually a reduction or cessation of tremors when the person starts moving and when asleep.
Stiffness of the limbs occurs, with slow, rigid, jerky movements which can be difficult to initiate. As the disease progresses, it can cause difficulty in performing everyday tasks, such as buttoning clothes, tying laces, handling coins, walking, standing and getting in and out of vehicles. Getting out of bed or chairs may be troublesome, and in some cases it becomes impossible to move. The Parkinsonian gait is characterised by small shuffling steps and a hunched posture with little or no arm swing. Loss of smell, sleep disorders and constipation may also appear in the early stages. A loss of balance occurs in the later stages as the disease progresses.
Other symptoms may also include:
- Depression and anxiety
- Difficulty in swallowing
- Excessive salivation with difficulty in retaining saliva (drooling)
- Very tight writing, due to the loss of dexterity
- A quavering voice, without expression and slurred speech
- A lack of facial expression, with reduced or no blinking
- The presence of an oily film on facial skin
- Urinary incontinence
- Confusion, memory loss and other mental disorders, occurring rather late in the course of the disease
Treatments For Parkinson’s
Parkinson’s is difficult to manage because some treatments for non-motor symptoms may worsen motor symptoms. Sometimes a surgical procedure called “deep brain stimulation” is used to treat the symptoms of Parkinson’s disease. This therapy may be appropriate in some cases. However, surgery is not the standard treatment and is considered only after the failure of pharmacotherapy. The procedure involves inserting a probe into the brain which targets specific regions capable of controlling the tremors or involuntary movements.
Physiotherapy can help improve flexibility, reduce muscle stiffness, and relieve stress. Although each individual is unique, there are noticeable changes as the disease progresses, and exercise is recommended to improve muscle strength and maintain fitness, flexibility, improve balance and prevent falls, and help with pain relief.
The goal of occupational therapy is to help maintain or gain maximum autonomy for individuals with disabilities. Its effectiveness in the fight against Parkinson’s disease is well established. Occupational Therapists assess the patient’s environment and provide technical assistance to facilitate better communication, movement, bathing or eating. They can advise on adaptations for the home to increase safety and mobility, and recommend ways to continue with work, hobbies and leisure pursuits. Occupational Therapists propose comprehensive solutions to promote independence in daily living.
Speech And Language Therapy
Speech and language therapy can prevent or correct difficulty with speaking, problems with swallowing, decreased facial expression and problems with writing. Depending on the patient’s problems, it can play a central role in the treatment of Parkinson’s disease, especially as these disorders are social isolation factors.
The principle of rehabilitation is to enable the individual to take over automation by voluntary control. It begins with a speech and language assessment designed to identify functional disturbances and fluctuations based on taking medication, emotional state and fatigue. It continues with a detailed study of component processes such as speech, swallowing, facial expression or writing. Mobility exercises help the patient to regain proper control of motor functions.
Good nutrition can help people with Parkinson’s disease to stay healthier. The quality of the diet contributes to maintaining or achieving a healthy weight, maintaining optimum energy and retaining sufficient strength. People may experience problems with foods which can impact on drug treatments, and lead to fluctuations in weight. The best advice is to aim for nutritional balance from a variety of food groups. Advance planning of what to eat, and when to take medicines may be required for some people. It is vital to take medications as prescribed, but it is important to keep in mind that proteins in foods such as yoghurts, eggs, cheese, fish, meat, pulses, beans and nuts can affect the efficacy of drugs used to treat Parkinson’s. It is not advisable to reduce protein intake, as it is important for a balanced diet. A doctor, nutritionist or dietician should be consulted to assess and regulate protein intake.
Mobility Equipment and Disability Aids
Walking frames are a valuable aid for people who have problems with balance and/or weak leg muscles. Walkers can help redistribute the majority of the user’s weight from the legs to the arms, thereby reducing leg pains. Zimmer frames are standard walking frames without wheels which are normally used indoors. These sturdy metal frames are constructed from steel or aluminium, and feature solid rubber feet which help to prevent slippage when the frame is in use. The hand grips are moulded from plastic, and some are contoured, which distribute pressure evenly through the hands and palms. Some models also feature adjustable heights.
Although the frame must be lifted and moved forward for each step, walkers provide a wide support base. The frame can be leaned on, using the hand grips for support, while small steps can be taken into the middle of the frame. Using the frame requires a stop and start motion, therefore it does not allow for a fluid pattern of movement. They may not be suited to people who tire quickly or have problems with start movements, which can often be a major symptom of Parkinson’s. Walkers with wheels, forearm walkers, folding and reciprocal frames are also alternatives to be considered depending on the individual’s physical condition.
One of the main reasons for falls in people with Parkinson’s is the inability to regain balance after slips or trips over obstacles while walking. Walking sticks are mostly used by people with mild to moderate stability problems. The dominant hand used to control the stick will depend on which side of the body is stronger, and which hand the individual prefers to use. Likewise, there are also different ways of using canes such as moving the cane and dominant leg first, or by using a laser canes. A standard straight cane with rubber tip is easiest to use. The height of the cane should be adjustable for maximum support, and the hand grip should feel comfortable. A hiking stick or pole may help to maintain better posture when walking. If freezing of gait is a factor, walkers and laser canes may be more suitable. Canes with multi-point bases (three or four points) are best avoided, as Parkinson’s patients tend to find these canes difficult to use, as all the points do not make contact with the ground simultaneously, thereby making them less stable.
Parkinson’s affects hundreds of thousands of people every day. A typical symptom of the disease is called ‘freezing’, or blocks in motor functions which cause difficulty in starting movements and continuous motion. Feet remain bonded to the floor and the individual is unable to initiate movement of the lower limbs. This phenomenon of freezing interferes with daily functioning and quality of life and often leads to falls, which can potentially cause serious injury. Laser canes can help to re-establish normal walking. They have been proven effective in improving the quality of daily life. A red laser beam is projected on to the ground ahead of the user, enabling them to focus on the action that they must perform to not only walk, but increase stride length.
Laser canes are not only useful for Parkinson’s patients, but for those with abnormal gait, and those recovering from strokes. The laser beam is a safe visual cue which can enable users to break ‘freezing’ episodes. Laser canes are ideal for people who would benefit from minor walking support. Laser canes are weight activated and height adjustable. As the cane is lifted from the ground the laser beam is automatically disabled to avoid the loss of control. The laser should always be switched off and stored safely when not in use.
If getting out and about is challenging, and it is not possible to operate a wheelchair without assistance, a transport chair may be the perfect solution. Similar to a manual wheelchair, but with a lightweight frame and smaller wheels, the transport chair is ideal for moving around the home, or when out shopping. Transport chairs are easier for navigating narrow hallways and doors, particularly in domestic settings. They are durable with easy clean upholstery, the backs fold down for transportation and storage, the armrests are padded for extra comfort, along with swing-away footrests and wheel locks.
Home Adaptation for Independent Living
Adapting the home environment is also essential in the case of Parkinson’s. Some simple measures can provide significant improvements in daily life for patients. Thus, all dangerous or obstructive objects should be removed. In addition, there are many useful remedies to reduce limitations in motor functions.
Rails For Doors And Stairs
Staircases can be fitted with a handrail on one side, and they may be extended to fit the full length of the staircase. Extension handrails can be bought from DIY stores to extend the existing handrail if required. An additional handrail on the opposite side of the staircase can provide extra support if needed. Generally, ‘mop stick’ handrails with angled brackets are easier to grip and they should extend about 300 millimetres past the top and bottom steps. Newel rails enable a constant grip by the user at either end of the staircase and around corners.
Grab rails situated beside entrance doors can provide a useful hand hold when entering the home. The rail should be installed at a convenient height, and it should not restrict access to key holes. Cranked or offset grab rails which project from the door frame are also available.
Steps and ramps are perfect for the less able walker. They are simple to install and remove, and fit front and back doorways with a minimum of groundwork. They can be fitted with minimal impact to to the existing structure. Modules sit over existing surfaces and structures, facilitating easy restoration to the original state if the steps or ramps are not required.
Widening Of Doorways
Widening doorways at entrances or exits to your home can be enormously helpful to Parkinson’s patients who suffer with freezing episodes, which may be associated with perception of space. Studies of how people with Parkinson’s approach narrow, normal and wide doorways showed that narrow doorways were the most problematic, due to a sensory perceptual mechanism that contributes to, and may even cause freezing episodes that occur.
Chair And Bed Raises
Elevating chairs and beds can make sitting and standing much easier and more comfortable, and also help to prevent falls. The type of raiser required depends on the furniture it will support, but there are multi-purpose linked raisers that elevate furniture without damage and provide extra security for users who lack strength and co-ordination.
Bathroom and bedrooms should be kept free from clutter. Shelves should be cleared to save items falling to the floor, necessitating stooping and bending which may lead to accidents. Towels, clothing and other items left on the floor can lead to trips and falls. Raised toilet seats, commode chair and bath rails may also be required.
As Parkinson’s disease affects the muscles, movement can become increasingly difficult, and climbing stairs may become impossible. Assistive technology such as stair lifts can be the answer to this mobility issue. If a stair lift is required, all the factors influencing the type of lift you need must be considered in order for it to fit the design and limitations of your home. To ensure safety, most stair lifts are equipped with seat belts, swivel lock systems, and obstruction sensors which detect obstacles and stop the lift automatically.
Straight Stair Lifts
These are powered lifts which are mounted on tracks, and can usually be fixed on the most suitable side of the stairs. Straight tracks are generally more cost effective than curved tracks. As alterations are not normally a requirement, straight stair lifts are less costly to install than other types of lift. Installation can be completed within a day. Straight stair lifts are not suitable for corners or bends, they can only travel in a straight line, mostly from hall to landing.
Curved Stair Lift
Many buildings have curved or spiral staircases which can be fitted with a curved stair lift. Depending on the stairs and the available space, a track is placed inside or outside of the stairs, and lifts can be fitted even on narrow staircases. The stair lift should run the full length of the staircase. As curved stair lifts are more expensive than straights, it may be tempting to cut costs by installing a straight lift. Long term this may turn out to be a false economy if the user becomes unable to negotiate the last few stairs.
Perch Stair Lifts
A perch stair lift may be the answer for people who have difficulty in bending the knees and hips, or those who use a staircase too narrow for a standard stair lift. Specially designed to overcome these problems, the perch stair lift works by remote or manual control, and can be positioned to provide the most comfort and maneuverability possible. Like most stair lifts, the perch model can be installed as required.
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