Roger Childs Blog Post: More ALS Research
The More ALS Research posting talks about some of the things that Patients with ALS (PALS) can do to prolong their life. Because the throat is affected and swallowing becomes more difficult over time, a PEG surgically implanted feeding tube may be required at some point in time to ensure that the patient gets enough fluids and nourishment to sustain life and stay strong.
In addition, the diaphragm is eventually affected by muscle spasms and weakened, and therefore the patient may need breathing augmentation through noninvasive ventilation (NIV) or eventually a tracheotomy. If started at the right time, NIV can add almost a year on average to a PALS life. Tracheotomies can also add significant time if performed early enough. Roger indicates a Japanese study from 2003 of 70 ALS patients who received tracheotomies, and 30 of them lived more than 5 years afterward. There is also a new implantable device that strengthens the diaphragm and keeps it functioning similar to a heart pacemaker.
With all of the focus on new stem cell research and other therapies that may eventually address the mutant SOD1 protein (superoxide dismutase 1) issues identified in this post, the important thing is to stay alive as long as possible so that we are alive when a cure or effective treatment is found.
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