Caroline's ALS Story




Caroline's first symptom began with weakness in her left hand sometime in June. In July she started noticing difficulty with pinching, such as opening a sting cheese or being able to pinch a clothespin open. She put off going to the Dr in July because she was getting ready for a big family get-together at the end of the month.

After a wonderful weekend together her children all returned to their homes on Sunday, August 1st. On Monday August 2nd while trying to express something she could not formulate her sentence and when the words finally did come they were slightly slurred. Both of my parents became very concerned at that point and she started first routine and then specialized testing. By mid August her speech was slurring most of the time and her left hand was quickly becoming useless.

She had an EMG at the beginning of September but it was so painful for her that they were not able to complete the test. On Sept 14th her neurologist explained that every test had come back negative. He convinced her to allow him to do one EMG needle in her right arm, because that arm was thus far symptomless. He saw abnormalities in the results said that was indicative of ALS. She had the bulbar form of ALS, which means that her speech and swallow muscles were some of the first affected. While her body deteriorated her mind remained alert and unaffected.

The disease was relentless in its pursuit and she never experienced a plateau in her deterioration. Her abnormal progression rate might have been due to the fact that there is a possibility she had a familial type of ALS. If you are interested in reading about that you can read about our appointment with the geneticists here.

Caroline peacefully passed away in her home on February 1, 2011 at 10:56 PM. It was less than 8 months from her first symptom to her last breath.You can get a more detailed understanding of how her disease progressed by going back through her blog archive.

She faced each day with optimism and cheer. She endured this horrific disease with grace and dignity and left everyone around her better just by her example.