Hidden Costs

In a previous blog I wrote about the costs of ALS. This disease has a lot of hidden costs along with the highly visible costs associated with renovations to allow for a wheelchair and modifications to vehicles and all the other sundry things that crop up. Here are a few additional costs that you don't think about unless you face life in a wheelchair and a continuous loss of strength.

When we went to the boat, the first thing I noticed is that the engine needed servicing. So I called the Mercury shop at the docks. They asked if I could take the motor off and bring it up to them, something I have done almost every year for the last decade. This year I could not, so they would have to do it. It adds $100 or more to the cost of the service.

If you keep a boat in ocean waters, you know about the detritus that grows below the waterline. The nice clean lines of a boat become home to all kinds of sea creatures, especially muscles. This is true with my boat. Each year I would take the boat to Race Rocks Yacht Services where they would lift it out of the water at a cost of about $200 round trip. Then I would have them pressure wash it, a service included with the lift. At that point I would assess the boat and paint the bottom if required, something that would happen every other year or so. This year is a painting year but I cannot paint. So, for the first time ever, I am paying to have the boat bottom painted for an additional cost of about $400 or so.

As of now I can get on and off the boat with some effort. It occurred to me last night that my condition will deteriorate between now and the end of August. I will likely need some additional aids to getting on and off board. The best system will be a block and tackle over the boom attached to a bosun's chair. The boom will swing sideways over the dock and can be used to lift me in and out of the cabin too. The chair and tackle will likely cost about $300 - $400.

There are other things too but I am going to stop here. This more than $1,000 additional expenditure is simply because I can no longer function normally. It is a cost of having ALS, a hidden cost.