Ron McCormick turns 62 years old today. It’s a birthday to celebrate. He should eat lots of sugar-loaded cake. He should open presents from loved ones. He should kick up his heels, dance a little, maybe on a table. But he can’t because he was diagnosed with a fatal disease called ALS (Amyotrophic Lateral Sclerosis a.k.a. “Lou Gehrig’s Disease”).
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
Ron is now completely paralyzed. He has lived with the disease for almost 9 years. Typical life expectancy is 3-5 years after diagnosis. So he has lived far beyond the “norm”. But he is tired. He is weary.
As motor neurons degenerate, they can no longer send impulses to the muscle fibers that normally result in muscle movement. Early symptoms of ALS often include increasing muscle weakness, especially involving the arms and legs, speech, swallowing or breathing. When muscles no longer receive the messages from the motor neurons that they require to function, the muscles begin to atrophy (become smaller). Limbs begin to look “thinner” as muscle tissue atrophies.
Ron has been on a ventilator for more years than I can remember (since 2003). He can’t eat. He can’t drink. He can’t swallow. He has a feeding tube. His throat has to be suctioned out continually. He can’t sit up on his own. He can’t talk. He only “talks” using a special computer. My mom and his caregivers try to read his lips but over the years that has become almost impossible. He can’t walk. He can’t hug his grandchildren. He can’t work on rebuilding his Monte Carlo. He needs 24/7 care, even though the state of Missouri doesn’t feel he “needs” it and will not pay for that kind of care. My mother is left to “fend for herself”, using whatever or whoever she can as a caregiver. Many of these people, although good-hearted, are not qualified to be this type of caregiver and they learn as they go (just as she has). With all this she also works a full-time job and takes care of Ron’s young grand kids.
Although the cause of ALS is not completely understood, the recent years have brought a wealth of new scientific understanding regarding the physiology of this disease. While there is not a cure or treatment today that halts or reverses ALS, there is one FDA approved drug, riluzole, that modestly slows the progression of ALS as well as several other drugs in clinical trials that hold promise.
It’s not enough. More testing and Federal funding is needed everyday. I pray that someday this disease will be a thing of the past but it will not be until Congress gets off their rear-ends and funds testing more heavily. I also know that by the time there is a cure, it will be too late for everyone suffering from this disease today.
Initial Symptoms of the Disease:
At the onset of ALS the symptoms may be so slight that they are frequently overlooked. With regard to the appearance of symptoms and the progression of the illness, the course of the disease may include the following:
* muscle weakness in one or more of the following: hands, arms, legs or the muscles of speech, swallowing or breathing
* twitching (fasciculation) and cramping of muscles, especially those in the hands and feet
* impairment of the use of the arms and legs
* “thick speech” and difficulty in projecting the voice
* in more advanced stages, shortness of breath, difficulty in breathing and swallowing
The initial symptoms of ALS can be quite varied in different people.
Looking ahead: October is ALS awareness month. There are many walks to raise money is different cities. This year, Denver’s Walk to d’Feet ALS is October 10, 2010 at Denver’s City Park, 10:00 a.m. Fort Collins Walk to d’Feet ALS is September 26, 2010, 12:00 a.m. at Colorado State University Oval. This is a 3k walk.
For four years we walked in this fundraiser as TEAM McCORMICK when it was held at the old Mile High Stadium and then at the Pepsi Center. We also attended a candlelight vigil in 2003. Mom helped organize a walk in the Apple Festival Parade in Versailles, MO too. It’s been a few years since we have walked…but this year I want to do it again.
Because it’s time we found a cure!