Xaliproden fails in ALS, but hope remains

When you decide it’s time to jump off the work train, there are a couple of government safety nets ready to catch you. Recent changes have made these nets a little stronger for people with ALS.

Striking people of every ethnic, cultural and economic background, ALS is an equal-opportunity disease and the ways people cope with the disease can vary widely based on their cultural backgrounds.

Last fall, Catherine Wolf, 58 and a nine-year ALS survivor, won a war with her insurance plan over long-term nursing coverage. Wolf, who is vent dependent, now has insurance coverage for round-the-clock skilled nursing. The experience taught her valuable strategies for fighting insurance company denials.

VEGF deficiency implicated in second disease

A recent MDA-supported study found that a deficiency of a protein called vascular endothelial growth factor (VEGF) is likely to be a major contributor to spinal-bulbar muscular atrophy (SBMA, or Kennedy’s disease), a motor neuron disorder that in some respects resembles ALS, though it’s less severe.

One way to stay a jump ahead of ALS is to consider who will handle your financial affairs if you lose your ability to make or communicate decisions. Otherwise, a time-consuming and potentially costly court procedure may be necessary for a spouse, relative or companion to handle your financial transactions or sell your property.

Power of attorney

I was diagnosed with ALS in July 1998. Looking back at almost six years of living with ALS, I can identify a number of coping mechanisms that have helped me immeasurably, as well as a few that would have helped if only I’d followed the advice of the good people at my ALS clinic.

It just takes one little wrong move, like leaning over to tie a loved one’s shoelace, for something to pop in the lower back and put you out of commission. For the caregiver of a person with ALS, this kind of injury can be disastrous.