By Suzy Hobbs, FNP, Prisma HealthMy heart rate accelerates, and my hands are just a bit shaky as I anticipate going into the next patient room.A husband and a wife are waiting inside to find out why she has fallen twice in the last two months and feels as if her legs will just not support her.I knock and enter the room, smile, and shake their hands.
They are very sweet, but rather timid looking as they await the diagnosis.I roll my chair close to them, touch her knee, and say the doctor knows whats wrong.You have something called Amyotrophic Lateral Sclerosis or ALS.
They both look at me wide eyed, shell shocked.Her husband says.What? Lou Gehrigs disease, I reply.It is at that time that three little letters changed the trajectory of their lives.
Nothing is ever going to be the same, Amyotrophic Lateral Sclerosis is a degenerative neuromuscular disease for which there is no treatment or cure.It affects every part of the body.In general, the incidence is 1:100,000.
Ten percent of ALS is found to be genetic.This disease affects the muscles so walking, standing, dressing, grooming, and feeding oneself is impacted.It also takes the ability to swallow, talk and eat.
It also causes chronic respiratory failure, and the person uses a noninvasive ventilator just to breathe.From the date of diagnosis, the prognosis is three to five years.There are only two medications available that prolong life for 3-6 months.The first one is called Riluzole; it has been in use for a long time and is very expensive, but is covered by insurance.
The other medication, Radicava is $150,000 a year and insurance may not cover.The average out-of-pocket cost to take good care of a person living with ALS is $120,000 per year after insurance.There is also so much equipment needed like a power chair which runs between $30,000 to $48,000 and even with insurance there is still a 20% co-pay.As you can imagine, the patient and family are already overwhelmed just by the diagnosis, let alone how to pay for all the needs.
People living with ALS and their families are the nicest people in the world.There is even a scientific study to back that up.Despite the overwhelming changes they face, their hope, ingenuity, and selflessness make taking care of their medical needs a joy.
Research is ongoing for the cure for this disease until one day those three little words arent so scary.For support in Upstate SC:WEB: www.TouchedbyALS.org | Email: [email protected]
Disclaimer: This story is auto-aggregated by a computer program and has not been created or edited by Senior Savings Deals.
Publisher: Life Plan Community ( Read More )
Publisher: Life Plan Community ( Read More )
