ALS starts affecting life even before its detection. The life of an ALS patient can be divided into two phases: the pre-diagnostic phase and the post-diagnostic phase. Each comes with its unique characteristics. The disease not only affects the patient but also leaves an everlasting impact on the family of the patient.
The Pre-Diagnostic Phase
The long wait for the diagnosis
The initial symptoms of ALS are similar to those of any other motor neuron diseases which are curable. Hence, detection of the detection takes some time. No test can provide a definite diagnosis of ALS, although the presence of upper and lower motor neuron signs in a single limb is strongly suggestive. Doctor’s generally adopt the process of elimination and ruling out of other diseases which have similar symptoms. If all tests to those diseases turn negative, then possibility of the patient suffering from ALS is entertained. Doctors often prescribe a number of tests and ask them to be repeated after a period of time to understand the pattern of the symptoms.
The tests that doctors prescribe to rule out other conditions include:
♢Nerve Conduction study
♢Magnetic resonance imaging
♢Blood and urine tests
Risks of relying on a single medical council
It may even be a prudent choice to take second or third opinion as that may expedite prognosis. The earlier the detection is made the better is the chance to initiate administration of the drug Riluzole, delay the degeneration, and prolong the longevity of the patient. The risk that one exposes oneself to by referring to only a single doctor is that if a doctor takes too long to run the test and arrive at a conclusive diagnosis of ALS, then the disease might progress. Since the disease progression cannot be reversed, a delayed administration of
Riluzole can mean irreversible degeneration of the body.
Life After Diagnosis
Life after diagnosis of ALS is very unpredictable as the progression and the spread of the disease varies from person to person. However, one thing is certain that the patient will gradually loose control over his or her muscles and find it difficult to walk, talk, chew, swallow or breathe. Dependence on the family members in doing basic tasks like eating, getting dressed or taking shower will increase over time.
The physical condition of the patient may deteriorate fast or slowly but it is likely to happen surely. Yet, the patient can see, hear, smell, touch, make eye movements, and urinate and
For some patients, the progression of ALS gets arrested without progression beyond a certain level. This occurs without any known cause and the progression can start just as abruptly and without cause as it had stopped, irrespective of patient follow-up with doctors.
As ALS spreads the typical patient finds it difficult to independently get in and out of bed. The patient also finds it increasingly difficult to use the limbs (arms & legs) and will have to depend on family members. Eventually, as the disease progresses, it affects the muscles responsible for lung movement and breathing as well as the vocal cords which allow for involuntary swallowing of solid or liquid food. A ventilator or respirator can solve the oxygen intake problems but do not alter the disease progression. The most common cause for mortality in ALS is due to breathing difficulty.
ALS calls for high investment on medicines, therapies, and supporting equipments . As per a study by MDA the per patient annual cost of ALS treatment involves direct medical cost, nonmedical costs and indirect costs or loss of income. It is estimated to be $63,692 per patient per year.
The outpatient care constitutes the greatest part of the medical costs while adoption cost like moving to a new house or house modification and paid caregiving costs take away the most part of the nonmedical cost.
Allopathic medicines cost
Till 2017, Riluzole was the only drug for the disease what can help the patients slow down the degeneration. The average retail price of the medicine as of 2017 is $1, 148. 16 and it comes to the consumers at varied discounts ranging the price from $110 to $ 356 per 60 tablets of 50 mg each.
Since 2017 the US Food and Drug Administration has approved use of another drug Radicava (edaravone) for the treatment of the disease. The medicine costs $1000 per infusion. The drug is administered intra-venously.
Diagnostic tests cost
Since there is no single test to dignose ALS, it takes multiple clinical and laboratory testing to rule of other conditions or diseases that have similar symptom of ALS. The financial implications of the numerous tests include a significantly large diagnostic cost sustained through a year or so before the diagnosis of the disease. The costs vary from country to country and depends on time.
Impact on the Individual
Loss of self-worth
The person suffering from ALS is not only affected physically but also psychologically. The disease is a silent killer. It takes away all the basic abilities of the patient slowly but surely. This has a huge detrimental impact on the person’s mind. Gradually loosing one’s ability to perform basic functions like walking, talking, eating, writing, etc and becoming dependent on others is a trauma in itself. The patient ceases to work and earn, which adds to a sense of worthlessness.
A unique trait of ALS is that while it leads to severe degeneration of bodily motions, it leaves the mind unaffected. In a way, the mind becomes captive within the body. There is no pain during the entire degeneration phase. There is just gradual immobilization accompanied with difficulty in breathing during advanced stages.
Over the time the patient develops helplessness, loneliness and haplessness in their minds which in turn results in deep sense of depression and agony. People who enjoyed very active and social lives find this sudden change in life-situation too hard to deal with and incongruent to their personality types. Furthermore, with limited physical mobility, there are no avenues to meet new people or take on new tasks. In most cases, patients resort to
over-thinking, negativity and ultimately plummet into depression. This further aggravates the patients who many times turn suicidal.
Effect on Family
ALS does not only affect the person, it affects the family as a whole. With the patient who experiences gradual decline in his or her physical status from being an able person to a state where one is completely dependent on either other member of the family or paid caregivers or equipment, it is a trying situation for the other members of the family to witness such a deterioration. The social, emotional, psychological, and financial costs of the disease are overwhelming.
The importance of early diagnosis
Accepting the fact that a near and dear one is a victim of ALS is very painful emotionally. The next step is to prepare for the forthcoming situations where the house and its facilities need to be modified to accommodate the declining health status of the patient. It may require change of house.
Early diagnosis is very helpful for the family to prepare themselves to deal with the trying times ahead. If suitable changes to their home are made while the patient is till active and able, then it becomes less burdensome for the family members to look after the patient during later stages of the disease (which include complete immobilization of the patient). Otherwise shifting home at the same time looking after the patient turns out to be a tremendously arduous task. Shiting the patient from one place to another can be both difficult and
detrimental for the patient.
Finding a suitable home
Choice of suitable residence is another problem for the family. As the patient will be confined in a room or a house, it must be well ventilated. The surroundings of the house must be good to allow fresh air to come in and it must be on the ground floor so that in case of any emergency, which may occur frequently at the later stage of the disease, the patient can be easily take to hospital or nearest ALS centre. Looking after the patient and taking care of his or her every single and tiniest needs is a job itself. As the person loses his or her muscle controls, their dependence on others increase manyfold. At every step this person needs care and assistance. There must be someone round the clock to fulfil his or her requirements.
Dealing with the financial strains
The financial health of the family gets affected in a number of ways. The patient cannot continue working and hence there is an income loss for the family. If that person happens to be the breadwinner the situation turns severely grim. Though it may sound inhumane but from the financial perspective the patient becomes a ‘cost’ to the family.
Right from the pre-iagnostic phase, the doctors’ costs and cost of the tests, which are usually quite high, start draining out the family’s financial resources. Apart from the post diagnosis medical costs, the nonmedical cost including paid caregiver, physiotherapy sessions, equipments and loss of income increase the hardship of the family.
Planning for medical and non-medical costs and accommodating the new requirements in their lives families of ALS patients can be in a better positon to handle the conditions arising out of ALS. ALS patients need a lot of attention to sustain. However, beyond the caregiving, family and friends need to spend quality time with the patient to the patient in upbeat mood despite the medical conditions.