“Let There Be Light “ Chapter 47

I'm sure everyone reading this blog will wake up, turn on the lights, go to the kitchen, plug in the toaster, set the coffee pot, and start reading my blog. This might not be exactly what you do, but the point is that you can turn on power as needed and read my blog.

Last month we had a lot of storms. Luckily, although the lights did flicker, we didn’t actually lose power.  Our house is also located where power lines are underground. This helps when it storms; preventing damage from falling trees or heavy snow.  Our electricity company also has a program for customers requiring life support equipment. We are on a priority list to restore power. This is a great help, but who’s first if they have multiple families requiring immediate support during an outage?

Most people don’t worry about power outages. In the past, the biggest concerns we had was whether or not we had firewood and how much gelato I would have to eat before it melted.

Today, Laura and I have a game plan for what we will do if we lose power. We know our critical systems are my ventilator, wheelchair, and my Tobii. First, we make sure all systems are charged every night and the van is never on empty. We know we have a minimum of 12 hours before we need to find power and we keep a minimum supply of gelato on hand.  As a second line of defense, our van has 110 power so we can recharge our systems if needed. Our last resort is to find a hotel, but that comes with logistical challenges and more than likely I’m sleeping in my wheelchair anyway, so we don’t need a king size bed.

I have to say, if this is my biggest problem, then I am doing ok, We can do better, though. Through the VA Special Adaptive Housing grant, I can have a whole house generator installed. This will ensure that if we were to lose power, the generator will kick in and I won’t need to scramble or worry about where we are on the priority list.

First we had to complete the VA forms, find three estimates, get the approval, and get it installed. Sounds simple enough, right? Nope, nothing is simple when working with the VA except being denied.  We are currently in the process and hope to have it soon. Finding a company that will install the generator and fuel tank is the tricky part. However, Laura did find one. With the new generator our Christmas lights are going to be HUGE!

As I sit here watching TV, writing my blog with the lights on, I'm wondering how PALS without the blessing I have of the VA live with ALS?  I imagine most Americans have the resources or connections, but what about those in other countries? Do they have a choice to live with ALS, and if so, how? Or does one just wait to get weaker and die? I also wonder if it is more humane to die naturally without these resources, or to extend my life living by machines and relying on others.

A quick internet search found that the most cases of ALS in the world are in the U.S. The Midwest, specifically, currently has the largest number of people with ALS at 5.5 cases per 100,000 population. Researchers have also found that the prevalence rates of ALS are highest in Uruguay, New Zealand, and the United States.”  Is this because these countries have the resources to identify ALS? Why is it lower in other countries? What are we doing wrong?

In the end I can only pray for PALS who are under-resourced. I pray for God to have mercy on them. Thank God I am blessed to live in the country I spent 35 years serving, where ironically veterans are twice as likely to develop ALS.

Love and blessings