Get active for ALS

Peter Tell
Peter Tellposted on on July 28, 2015

Get Active for ALS

At Pageworks we try to provide solutions, showcase great work, and answer questions on a variety of communication topics, but occasionally events, topics, or causes connect with us personally. Pageworks is pleased to be a sponsor for the Mercy Health Tour de Rapids event to help raise money for ALS research and awareness. What many people do not know is how prevalent the disease is and how devastating the diagnosis is. Unfortunately, I do. I recently lost my mother to this disease.

ALS is a disease with no known cause and no known cure. Until the Ice Bucket Challenge blew up on the internet last year, it was also a disease that most people knew very little about. There are an estimated 30,000 people with ALS in the United States right now. Healthy people get ALS. My mother was a nurse who ate well, exercised, and by all medical standards was a healthy adult. One of the worst things about ALS is how little is known about it.

We know that:

  • Only 10% of the cases are inherited with the other 90% being sporadic.
  • Veterans are twice as likely as others to be diagnosed.
  • The average life expectancy of a person with ALS is 2-5 years after diagnosis.
  • There is only one drug approved for the treatment of ALS and it is expensive and only increases life expectancy by a few months.

When you or a loved one is diagnosed with ALS it’s a long and difficult journey. In fact, the diagnosis itself is a long process. Because we know so little, ALS is diagnosed by ruling out other diseases. In my mother’s case she noticed a slurring of speech and thought she may have had a small stroke. It wasn’t until after tests to rule out other possible diseases that we learned it was ALS.

If you’ve been close to someone with this disease you know how devastating it is. ALS takes away your most basic abilities. You lose the ability to move, talk, swallow, and breathe. Without expensive technologies you can no longer move around or communicate with people. Within a short period of time a person with ALS requires almost constant care for things that most people take for granted. For about a year I was only able to work part time in order to help and support my father while he cared for my mother. This is not a disease you can even fathom wishing upon your worst enemies.

The Ice Bucket Challenge started something last year. It increased awareness of ALS and raised a significant amount of money for research, but there is still so much to do. Research needs to be done to find a cause and find a cure. Support groups like the ones I attended at the Hauenstein Center need to become more prevalent for those affected. Communication and mobility technologies needs to be researched and made more readily available.

I encourage you to read more about ALS at the links below and take a look at the Mercy Health Tour de Rapids. Do what you can to support the research on this disease. We need to keep working towards a cure.

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