I recently attended one of my thrice yearly Clinic’s at Emory. As you might recall this is where each discipline stops by to check my progress and offer advice on how to best deal with what ever changing conditions are occurring.

The sum of these reviews is a couple of scores that the head nurse pulls together. One is my breathing percentage and the second is a functional rating scale or FRS. My breathing is at 84%, down from 87% in September. Breathing above 80% is considered normal. My FRS only dropped 1 point to 40 out of 50 points. Essentially I’m in the 90 plus percentile, a good place to be as most are much lower.

The reality of things is that I’ve seen a reduction in my hand and arms strength. I’m unable to write except for scribbling a signature. I’ve determined that most institutions will take an X in the signature box if you show them an ID. I love the swipe and run systems that require no signature at all for purchases. Technology is an ALS endures best friend.

Speaking clearly has become much more laboring. There is a measurable increase in having to repeat myself. I worry that folks will mistake my slurred speech as alcohol induced, especially if they have a badge and I’m behind the wheel. I'm much more mindful of the laws of the road. A good thing…I guess!

At this juncture each day boils down to a measure of energy in relation to the tasks of the day. With ALS the energy used to do normal activity is far greater then the norm causing fatigue quicker and the need to recharge. Learning how to schedule activities is critical to maintaining the appearance of normalcy and getting through a day stress free. As an example, two big energy drainers are taking a shower and getting dressed to go out of the house. I do as much as possible to put recharging time between these two activities. It’s an adjustment having to worry about such things.

My neurologist Dr. Glass showed up this time. In a nut shell he looked things over, asked about the family and talked about some new neck braces I might need as time goes on. Our primary topic for review was the only approved drug for ALS called Rilutek. It supposedly slows down the symptoms. He talked me into it. I’ll start it next week.

Ursula Dayle passed away January 14^th at 5:50am. The cancer was to aggressive and wide spread for conventional or alternative treatments to overcome. Over the past few weeks we had to accept that our desires would not prevail and God was determines to take her home. Linda is having a difficult time with this loss. I suspect it will be some time before she is able to think of her mom without tearing up.

Since Christmas we have spent as much time in Franklin, TN with mom then at home. We have one last trip this weekend (1-20-2006) to gather with friends and family to say a final good by.