Amyotrophic Lateral Sclerosis (ALS)
Many neurodegenerative diseases are a devastating diagnosis for patients and ALS is no exception. ALS is a motor neuron disease in which the upper and lower motor neurons die. ALS is fatal usually due to respiratory failure within a few years of diagnosis, but some cases can progress less quickly. With such a variable prognosis length, it can be difficult for those diagnosed with ALS to feel like they can make plans for the future. With such a bleak diagnosis it can be easy to get discouraged, so how can friends, family, and neighbors best support someone with ALS?
Spreading Awareness & Education
One way to support those with ALS is to simply spread awareness and educate others about ALS. A very popular and effective way to spread awareness is through a fun activity or event in the community. An example of this is Relay for Life and how that event helps to raise awareness and educate others about cancer. Fun activities are even more effective at spreading awareness when they tie in social media, like the ice bucket challenge for ALS. The ice bucket challenge definitely got the word out about ALS and even raised some money, but it may not have been as effective at educating others on the topic.
Another way to show support is to actually offer support to the family of those with ALS. Families are usually responsible for caring for their family member that has been diagnosed with ALS once the disease has progressed enough to have motor disabilities. If the family themselves cannot care for the ALS patient, they may need to hire a nurse and that can get expensive. Offering to come help out even once a week to do laundry or other household chores, put them to bed a couple nights out of the week, or bringing meals in would be a huge gesture to any family that has a member with ALS.
Understanding all Options
As a friend or family member of someone with ALS, another important thing to be mindful of is all the options surrounding treatment for ALS. Most of the treatments around today are aimed at slowing the progression and alleviating symptoms. The supportive treatments are there to help the person live a comfortable remainder of their life as much as possible. When the disease begins to progress faster, it can be hard as someone close to the ALS patient to watch them deteriorate and suffer. The treatments may be simply prolonging the inevitable and even though it may not seem like a viable option, letting nature take its course may be the preferred option of the ALS patient. It can be hard as those close to the patient want to hold onto them as long as possible and be able to say they tried everything. However, if the person has lived a full life and is at peace with where they are it’s best to support and understand their wishes.
Sometimes once a person receives an ALS diagnosis they begin trying to live life to the fullest before their disease progresses too far for them to be able to function well independently. In some ways this is just as an important time to support the ALS patient as points are further in the progression.
For more on the science behind ALS: http://www.sciencedirect.com/science/article/pii/S0304394016302877?via%3Dihub
Feature image: https://alsnewstoday.com/
Ice Bucket Challenge image: http://bigthink.com/ideafeed/what-the-als-ice-bucket-challenge-tells-us-about-successful-viral-marketing
Paper Dolls image: http://namidupage.org/resources/support-groups/
Bucket List image: http://theolemissyearbook.com/bucket-list/