An ALS diagnosis as a significant, life-changing event. It is important to take time to process and allow things to settle.
No task is so urgent that it cannot be set aside while time is taken to process the news.
Share the news 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 other health professionals.
Every ALS patient should be in contact with:
A physiatrist, who helps manage symptoms related to muscle weakness in the limbs and other parts of the body
A pulmonologist (or respirologist), who monitors and treats breathing-related issues
An occupational therapist, who provides adaptive equipment such as eating utensils, wheelchairs, and patient lifts
A speech-language pathologist, who supports communication as speech abilities change
A physiotherapist, who helps manage muscle stiffness and maintain mobility
Apply for government or private insurance assistance programs, such as disability benefits or tax breaks.
Get connected with charities 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.
Essential equipment such as a patient lift or wheelchair can always be bought in advance and left unused until they are needed.
Use a voice banking utility or service before there is any further 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.
A while after diagnosis, I told friends and family that I had 6 to 12 months to live. This was because my progression was very fast; within three months I went from being able to carry heavy drywall panels, to being unable to walk at all. My care team largely agreed with this prognosis as well.
That was over two years ago. Now, I can still eat and speak just fine, and I only need ventilation overnight.
– Man diagnosed with ALS at age 38