ALS the Price You Pay

What does it cost to live with ALS? This question has many answers, some you may not expect. Let’s chat bout that a bit.

These are the costs of living with ALS:
Physical abilities
Your Voice
Your Breath
Your Life

Finances, let’s start there why don’t we. First, if you-work or own a business, eventually you will be forced to retire or divest yourself of the business. There goes your source of income. Now you are on social security disability, if you contributed and qualify? This doesn’t begin to be adequate, many have to make drastic sacrifices to survive. Some resort to crowd funding to meet needs; yet the US is considered the richest most socially conscientious nation, I won’t go down that rabbit hole.

The financial devastation of ALS is truly a silent epidemic, to the general public that is. Those living with ALS know too well it’s insidious nature. Allow me to hit you with some figures:

• Over a 10-year period (2001-2010), all expenses related to the cost of care for an individual patient were collected concurrently and then analyzed in 2012. Results showed that total disease-duration costs were $1,433,992 (85% paid by insurance, 9% paid by family, 6% paid by charities). The highest costs were for in-home caregivers ($669,150), ventilation ($212,430) and hospital care ($114,558). In conclusion, this case study illustrates costs of care for ALS as a burden for patients that may impact treatment decisions.


This is dated, but what’s relevant is the reference to insurance coverage. Many needs of persons with ALS are often declined by insurance, don’t get me started on MEDICARE! So in addition to all the above, one often has to fight for approval, it is the family that ends up fighting.

Pain- it is stated that ALS is a painless condition…Ha! It is an emotional and secondary effect impact from a semi truck. The emotional pain is obvious, but the physical pain is a secondary effect from atrophy, strictures and locked joints.

Anxiety/Depression- these two are companions of ALS. Not just for the patient but also the family or caregiver. Please seek professional help when it becomes difficult to navigate living with ALS, sooner rather than later.

Time- goes without saying, from the onset of symptoms you are now on the ALS clock. What does this mean? ALS now determine how much longer you live, just a blunt truth.

Relationships- this is very painful, a double edged sword. You now depend on others for every need, some loose everyone close. However friends fall into two categories: those that can handle your new way of life and those that can’t. Here’s the blunt truth, not everyone is equipped to witness your decline.

Physical abilities, Voice, Breathing- eventually we will be paralyzed and depend on mechanical ventilation to breathe and eyegaze to communicate, if you choose to, many don’t.

Your Life…nuf said! M-kay

What’s your life worth? Mine is PRICELESS!


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