THE RACE SET BEFORE ME...

Gene and Michele after the St. Patrick's Day Dash Fun Run March 16, 2008

It probably really started late last summer or early fall. The physical weakening was slight at first, probably just a wrenched muscle or pinched nerve in the back. Rest would take care of it. Unfortunately, it didn’t.

So many people have asked “how did we know” and “how did it start” that we thought we should use this post to explain the onset and progression of Gene’s symptoms, which led to the diagnosis of ALS. In our next post we will tell you about the nearly 2 months between suspicion and diagnosis, which was in many ways a very special time for us.

Like we were, you are probably very unfamiliar with the disease of ALS. Many people have heard of Lou Gehrig’s disease, but the real name for the disease is Amyotrophic Lateral Sclerosis or ALS for short. Though, we do not want to only focus on the disease in our blog, we do want to educate people and bring much needed awareness to this very devastating disease.

ALS is a fatal progressive neuromuscular disease, characterized by weight loss, increasing muscle weakness, muscle cramps and fasciculations (generalized muscle twitching). The onset of ALS is subtle with muscle weakness or stiffness as early symptoms. There is an inevitable progression of wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and respiration. Mental faculties are not affected. The cause of ALS is unknown in 90% of cases, though environmental triggers are suspected. Only 10% of cases are thought to be hereditary. Also, ALS is not contagious.

Roughly, 5,600 people in the US are diagnosed every year. There are on average 30,000 Americans at any given time with ALS. Men in the age bracket of 50-60 are the most likely to contract the disease, though anyone at any time can contract it. Progression is at varying rates and usually begins with the tongue, arms, or legs. Gene’s began in the legs and abdominal muscles.

Late last summer, Gene was doing some projects in the yard, laying block and pruning huge trees that line our property. The only problem was everything seemed to take more effort. Then in October, we were in Washington visiting our son and daughter in law. Gene went jogging with our daughter-in-law, who was training for a ½ marathon. Gene was going to attempt 3 miles, which should have been fairly easy since he was in great cardio shape. But, after only a mile he came back into the house saying he felt like he was running in concrete. During that same trip he had an excruciating muscle cramp in his lower calf muscle. In January our daughter-in-law came down to run the Carlsbad ½ Marathon. Inspired by all the excitement, Gene and I decided we would enter our first 5K run that was to be held at the end of the month. On the day of the race, I sped out ahead of Gene. When we crossed the ½ way point, we had to pass by each other. I was concerned, because Gene looked fatigued and hunched over. Still thinking his back was the root of the problem, Gene signed up for a number of sessions with his favorite chiropractor. Exercises and strengthening muscles would fix it. It didn’t.

In March we traveled up to Washington to visit our son and daughter-in-law again, who were signed up for a St. Patrick’s Day fun run. Not to be out done by our kids, we signed up too. On the day of the race, our kids ran ahead with their friends. When it became obvious that Gene would only be able to walk this one, I decided we would walk it together. This was when I had my first inkling that something more than just a bad back could be wrong. Gene was having such trouble just walking normal. His gait was unusual, almost looked like a Parkinson’s disease shuffle, but different. A couple days later he was doing better and we continued on with the rest of our trip.

Later in March, Gene was scheduled to go to our primary care doctor for something else and I told him to ask for a referral to a neurologist, just to rule anything serious out. I told Gene to insist on the referral, which he had to do, because our doctor didn’t think his symptoms were worthy of being sent to a neurologist. We got the referral, but the first appointment wasn’t until May 1. Unbeknownst to me, Gene had been having quite a few painful muscle cramps.

Then the last Sunday in April, right before his May 1st appointment, we were eating lunch at home and I noticed that the undersides of his upper arms were twitching (known as fasiculations—painless muscle twitching) unbelievably fast. Being a former R.N., I went on the internet and did a search of all his symptoms. Seeing the words ALS and reading that it was a fatal neuromuscular disease, was like the darkest and scariest feeling I could ever feel. This could not really be true! I decided I would share with Gene that it was possible he had ALS and what it would mean, because what I read said that doctors will not even mention the words “ALS” before all other diseases or conditions are ruled out. Gene is not medically savvy and I did not want him to experience the shock of hearing for the first time that he would lose the ability to use his voluntary muscles and end up dying, when he was thinking it was simply pinched nerves in his back and maybe the worst thing that would happen was that he might need surgery to correct it.

I learned that the diagnosis time for ALS takes an average of a few months, because there is no specific medical test for it. ALS is only diagnosed by symptoms and ruling out all other diseases that could possibly have similar symptoms. As an aside, I personally, think it is cruel that if ALS is a likely or possible diagnosis that the doctor doesn’t lay the ground work by preparing the patient for what might be. I have read that this is very typical.

When the neurologist came into the room to examine Gene, he observed other parts of his body that were twitching and cramping, and checked for strength and coordination. When he ordered the tests that I had read were always ordered for the purpose of ruling everything else out, panic filled my heart. I knew the neurologist was thinking what I was thinking. The “tests” were ordered: blood work to rule out Lyme disease, heavy metal poisoning, checking if muscle tissue proteins were in his blood (a symptom of ALS as the muscle tissues atrophy as the nerves in the brain and spine die off); a series of muscle and nerve tests; and brain and spinal cord MRI’s.

The tests were finally completed and we had an appointment scheduled for June 23rd to go over all the tests. By this point, Gene’s physical condition continued to worsen. We asked the doctor to put in an authorization for a walker.

Gene is now using a mobility scooter, in addition to the walker, so he can conserve his energy. His right side is weaker that the left and he has what is called foot drop of the right foot. His upper body strength has worsened and he is unable to lift or carry heavy objects. His speech is still normal. He is unable to sneeze or cough normally, due to the weakened abdominal muscles.

The hardest part during those two months, was not being able to tell those that were closest to us that we suspected ALS. It was a very dark and lonely time. We spent our time during the weeks before the final diagnosis preparing ourselves practically, emotionally, and spiritually. We would like to tell you about these weeks in our next post.

We would like to end today’s post by thanking all of you who are reading our blog. Blogging is not something we would normally do, however, we feel compelled to share our story. The feedback has been overwhelming and way beyond anything we could have anticipated. We want to give you permission to pass our site on to anyone that you feel may benefit from reading it. We have been trying to keep up with the emails we have received and if we have not responded to you, please forgive us for our tardiness. We could not walk this road alone and we are so grateful to God for each and every one of you. If you are new to our blog and would like to contact us personally, Michele’s email is www.mccain2@hotmail.com and Gene’s is www.genemccain@roadrunner.com ; we would love to hear from you.

So until next time, let us leave you with these words…

"However, I consider my life worth nothing to me, if only I may finish the race and complete the task the Lord Jesus has given me--the task of testifying to the gospel of God's grace." Acts 20:24

Race on,

Gene and Michele