For some time now, I have been thinking of adding up the full cost of PMA since my diagnosis in 2017. It is a scary exercise but one which may help others to understand the monetary, physiological and psychological impact of the disease not only on the patient but also on friends and family. Although Motor Neuron Diseases are relatively rare, their costs are astronomical both to the individual sufferers and their families and to society at large.
Let me start out by saying that I am retired and still 100% independent so I have not suffered any loss of income and my wife is not required to stay home and care for me. In addition, I am fortunate(?) to have a slightly less virulent form of Motor Neuron Disease ie. Progressive Muscular Atrophy, currently affecting mostly my lower limbs. This is not the case for many ALS/MND/PMA sufferers. In many cases, both incomes are impacted and physical limitations are much greater, dealing a severe financial blow. What follows below is very much a PERSONAL accounting and there will be many with considerably higher costs and a few with lower ones. For the sake of simplicity, all amounts quoted here are in Canadian dollars.
Since some costs are one time and others are ongoing, I will specify only the costs incurred since my diagnosis in October of 2017.
|Accessible Vehicle||Easier Access, Carry PWC/Scooter, No clutch||$12,000|
|Acorn Stairlift (x2)||2 storeys (secondhand)||$8,000|
|eBike||Could no longer ride a normal bike||$2,000|
|Non-prescription||supplements, Cannabis, etc. ($300 monthly)||$5,700|
|Mobility Scooter (x2)||mobility||$4,000|
|Various Mobility Aids||walkers, canes, grab bars, stools, etc.||$500|
|Clothing & Footwear||heated socks, AFOs, footwear, compression socks, etc.||$1,000|
|Sub Total||From personal funds||$33,200|
|From ALS Loan Cupboard|
|10′ Access Ramp||$600|
|OHIP & Insurance|
|Prescription Drugs||Riluzole & Rabeprazole||$22,800|
|AFOs||Assist with walking||$1,600|
|Massage Therapy & Acupuncture||Reduce pain & stiffness||$1,500|
|GP Visits||10 visits approx.||$540|
|Blood tests, MRIx3, Misc. hospital tests||Quarterly – Estimate only||$10,000|
|ALS Clinic (OT, Physiatrist, PT, Pulmonologist, etc.)||6 months visits||$4,000|
Of course, some of the figures above are only estimates because costs for hospital visits and procedures here in Canada are not widely made public. The numbers here are simply to give an idea of the immense cost of this disease
As crippling as the financial cost may be, it is eclipsed by the physical cost. Almost all Motor Neuron Diseases are considered terminal. For the ‘average’ ALS patient, the usual prognosis is 2 – 5 years. In the case of PMA, those averages tend to be a little longer, perhaps 5 – 10 years. The more important factor is what those years look like. Motor neurons control the functioning of ALL muscles in the body. In the case of PMA which affects only the lower motor neurons, this means that limbs are usually the first to go. When the muscles can no longer be activated by the brain because the impulse from the brain can no longer reach the muscle, that muscle eventually withers and wastes away (atrophy). This leads to an incapacity to carry out even the most fundamental of activities: walking, feeding oneself, bathing, moving in bed, etc. Even scratching an itch can be impossible for someone with advanced PMA/ALS. Eventually, the disease will likely spread to the lungs and affect the basic ability to breathe. The majority of MND patients eventually die from lack of oxygen!
The psychological impact of PMA, although hard to measure, is also integral to the full cost of PMA. It affects much more than just the patient but also extends in particular to those required to care for them and generally to friends, family and co-workers as well as to the medical professionals involved. In broad terms, the devastating diagnosis of PMA or any motor neuron disease changes the lives of all involved. Only those who have experienced it can fully comprehend the magnitude of the changes that motor neuron diseases bring. As with all things, some handle it better than others.
Given these tremendous costs, please consider helping both the local and national ALS efforts by supporting our Walk to End ALS