An important first step upon being diagnosed with ALS is to take the time required to achieve a positive state of mind.
There are no tasks that are so important that they cannot wait until the mind has had some time to process the diagnosis.
It's important to share an ALS diagnosis with others so they can better understand the situation and actively contribute to preserving the highest possible quality of life.
Establish and maintain working relationships with care providers, such as physicians and home care workers.
Government or private insurance assistance programs, such as disability benefits or tax breaks should be applied for promptly.
Get connected with care providers and support groups. These groups can provide valuable resources, and are also a place where one can offer their own support to other people living with ALS.
Understand ALS, its symptoms, and how they affect one's life. With greater understanding, it is easier to make informed decisions that maximize quality of life and prevent unnecessary harm and expense.
Make arrangements for additional care needs or assistive equipment before they are required.
A patient lift or wheelchair can always be bought in advance and left unused until it is needed.
Use a voice banking utility or service before there is any significant decline in speech.
Create a digital signature for the purpose of signing documents before the ability to write clearly is lost.
Live as well as possible and enjoy time with loved ones and friends. Make new memories, and take time to preserve old ones. Direct attention toward the activities that are still possible, and enjoy them.
Get involved in advocacy. ALS is not well known. The more people that know about the disease, the more people can contribute to improving life for those with the disease.
Avoid prognosticating. There may be more time left than it seems, perhaps even a lot more.