So I wanted to talk about the costs of this disease. The physical costs are different for everyone I suppose. Not only are they different but they happen at different intervals. My physical costs have accumulated quite quickly since my diagnosis. The two major physical issues I have at this point are mobility and the loss of the effectiveness of my diaphragm. My mobility issues began with drop foot on my left side. That has now progressed to a bit of rigidity in my left foot with my toes being more pointed. That coupled with the loss of core muscles gives me what I lovingly call the John Wayne walk. The loss of core muscles make it quite difficult for me to get up from a prone position. I’m sure it looks quite comical when I try to get out of bed. I kick my legs and try to use what mass I have left in my lower body to bring my torso upright on the side of the bed. Oh well, so what if it looks funny, it gets the job done for now. 🙂 As far as the diaphragm thing, well that makes me look like a fish gulping for air when I do too much during the day. Got to tell you, my respiratory therapist has become my hero. His name is Michael and I told him he needs a big S on his chest. He’s passionate about what he does and I appreciate that.
So now I can rant about the financial cost associated with this disease. Now I’m sure everyone’s financial costs may be a little different. And I hope no one takes this in the sense that I’m whining. Understand that I have a lot of time to think during the day and I do a fair share of it. First off let me say that I have insurance. I got a policy that would protect me if I was ever hospitalized and needed a major surgery. I think they call it a catastrophic illness policy. With my family history, it was important that I cover myself for things like heart problems. And I did. Unfortunately my policy doesn’t consider ALS at as a catastrophic illness. It also doesn’t cover oxygen. And even though my unit does not provide me oxygen it provides me air, it is not covered. So that’s $1800 a month. I am on a prescription drug called Rilutek. Its purpose is to slow down the progression of the disease. Lita and I feel that it is working. So with that said it’s worth whatever it costs. Our pharmacy does not stock it so they had to order it in. When we went to pick it up the pharmacist asked if we knew how much it costs. We didn’t of course but we said yes anyway. I am on the highest dosage which is two pills every day. Each bottle holds 60 pills. Each bottle is $2500. Now Lucky for us our insurance does pick up a portion of that cost. We only have to pay just under a thousand dollars for the bottle. So those are the two big cost for us right now. On top of that we have the incidentals such as a walker, a wheelchair, assorted padded seats for me to sit on, and other small items. So when I’m sitting around thinking my thoughts these are some of the things that come to mind. What do the people do that don’t have insurance and they don’t have the means of which to afford themselves these things. I know about the ALS lending closet and places that donate certain items. But I can’t help but think there are folks out there that see these costs and give up. And that is unacceptable. There are many unfortunate sides to this disease. The fact that there are 30,000 cases at any given time in North America I believe creates some of the problem with high costs. A disease like cancer touches many more lives and therefore gets much more attention. For instance last month was ALS awareness month, but my local television station only ran one brief piece about a young fellow here that is living with ALS. But every morning and every day at lunchtime and every evening they had a piece on cancer. I’m not saying cancer is not a deserving topic. But it was ALS awareness month. Well I’m running out of smoke. Just talking to my computer wears me out some days. But no worries, I’ll be at it again tomorrow. Make sure you check back, and be sure to pass along this blog site to anyone you think would be interested. Thanks