THE PHYSICAL ASPECT

I mentioned in my last post that of the four aspects of this disease (physical, spiritual, emotional, relational), the spiritual is by far the most important in that it impacts all the others. Having said that, obviously the physical aspect is the most in-your-face of the four. One of the oddities of MND/ALS is that it affects everyone differently. Some are initially affected in only one or two parts of their body, others (like myself) are affected throughout the body. It can start anywhere, spread to anywhere, move quickly, plateau or even ‘burn out’ completely. No one knows what causes it, and there is no medical cure.

Of all the physical challenges I face related to MND/ALS, the most difficult for me is the degenerative nature of the disease. The almost continual need to make adjustments in order to compensate for increasing weakness can be very draining. However, I have disciplined myself not to dwell on the things I can no longer do, but rather to focus on the things I can do. And that has made a huge difference. It also helps to be a compulsive problem-solver—when something becomes too difficult, find another way to do it. Technology can also offer some very helpful solutions—like the head mouse I’m using to write this post.

Early on I identified the “Big 5” physical challenges of MND/ALS…
Ablutions – bathing and toileting
Transportation – including walking, driving, etc.
Consumption – eating and drinking
Communication – oral and written, verbal and non-verbal
Recreation – everything from sport to channel-surfing
Each of these areas contains their own challenges and milestones as the disease progresses.

THE SPIRITUAL ASPECT

For those who don’t know us well, my wife and I are both committed Christians, and in spite of the diagnosis, Nicky and I are full of hope and faith. We know that God is in control, and we are trusting Him unwaveringly to carry us through this. From the first week right up to this past week, He has been giving us some very encouraging messages from His Word that have lifted our faith to trust Him for complete healing. We are determined to fight this battle in His strength and in the authority of the Name of Jesus! We believe that God intends for this situation to result in His glory and the furthering of His Kingdom. It has already become very clear to us that God has many purposes that He is accomplishing through our circumstances—purposes both in our lives and in the lives of others.

In my last post I mentioned that our journey includes many different aspects—physical, spiritual, emotional, relational. I want to add that the spiritual aspect is actually the most important and has a huge impact on the other three.

Opening Post

Many of my friends have been encouraging me for a long time to start blogging, and I have finally given in and begun. An opening post is quite an intimidating thing to write as it sets the tone for the posts to follow. It will also determine if readers will be interested in reading future posts. I will try to keep it short, honest and readable. Then you can decide for yourself if you want to read further.

I am an American, living in South Africa since 1988. However, it is the period from 31 July 2006 to the present that I want to make the focus of this blog. That was the date that I was first diagnosed with motor neuron disease (MND), or, as it is known in the USA, amyotrophic lateral sclerosis (ALS). I had never heard of either name, but when the neurologist said, “Lou Gehrig’s Disease,” my memory blazed into action. “I’ve heard of that before. But didn’t Lou Gehrig die from that disease?!” “Yes,” my wife, Nicky, and I were told, “on average, MND patients die within 2 – 5 years of diagnosis.” Immediately my morbid sense of humour kicked in, “Then couldn’t you have delayed your diagnosis for about 20 years?” Many MND patients do live a lot longer I discovered when, like any internet junkie, I went home and Googled it. I won’t go into details here. If you want more info, you can do the same (if you haven’t already).

Our journey includes many different aspects—physical, spiritual, emotional, relational. In the weeks that follow, I will do my best to include you in all aspects of this journey. I welcome comments and questions along the way, and I will do my best to respond honestly and quickly.