Coping with ALS and outlook

How to cope with ALS

Finding out someone has ALS is often an emotional ride for both the patient and their loved ones. The below tips are some coping techniques that may be able to help in dealing with ALS:

• Take the time that is needed to grieve – Finding out about a fatal disease that will, in turn, reduce the patient’s mobility and their independence is a difficult experience. After diagnosis, it is healthy to take the time that is needed to discuss it with friends and family and come to terms with the issue at hand.
• Be positive – The medical team will often help the patient to focus on their abilities rather than their disabilities and will teach them a number of coping techniques through assistive devices and other forms of treatment. Although the typical life expectancy for someone with ALS is between three and five years after the symptoms appear, there have been a number of people that live for longer than 10 years. Remaining hopeful, but with an aspect of realism, can also help improve the quality and enjoyment of a patient’s life.
• Don’t let the physical limitations be a setback – Relatively speaking, the fact that the patient will suffer from paralysis and muscle weakening does result in their mobility being significantly hindered, however, this does not have to define them or their family. Many people suffering from ALS are able to lead rewarding lives.
• Attend support groups – Comfort is often found through joining a local support group for those who are suffering from ALS. Friends and family can also attend these and learn more about caring and helping their loved one with the condition.
• Find out about medical insurance and care – ALS is a condition that requires a lot of care and specialised attention, it is therefore best to find out about what one’s current insurance covers and possibly look into getting added insurance that has the most amount of benefits for someone with ALS. It is also a good idea to find out about future care options for the advanced stages of the condition such as a special care part or a full-time home nurse.

What is the outlook for ALS sufferers?

The symptoms of ALS tend to develop relatively quickly and there is currently no cure for the condition. The number of patients who live for longer than the five years survival rate is 20%. Roughly 10% of those patients will live longer than 10 years. Regardless, ALS is a fatal condition and should be treated as such.

ALS or motor neurone disease is a severe condition that will greatly impact the patient’s life and their loved ones. It can be extremely challenging to live with, but it is not as bleak as many people would imagine it to be.

Through specialist support and a strong community, a number of people are able to maintain various aspects of their independence for a large part of the course of the condition and can experience a better quality of life than they initially imagined.

The disease and life of the patient usually come to an end in a setting that is typically calm and often in their own home. They will typically pass away in their sleep from the progressive weakening of the muscles needed for breathing.

It is important to note that in the days leading up to this, the patient’s brain is often still working well and they can still hear and understand what their loved ones are saying to them. Because of this, loved ones should be a pillar of support for patients and speak to them as if they were still healthy individuals so as to keep their spirits up and their mind alert right until the end.