A few weeks ago my mother Joan participated in a half-hour radio interview with P.J. Ochlan of KGIL in Los Angeles. Since I can’t talk I had prepared some points to cover. Mr. Ochlan opted to read them verbatim and they are shown below (followed by a link to the show which you can download and play with Windows Media Player or similar program):
While I have an immediate financial need, this opportunity should be also used to inform the public. If not for the short average survival the number of concurrent PALS would be much higher and more visible like cancer or alzheimers. The NIH funding for ALS research is 10% of that for other diseases like atherosclerosis which already have effective treatment and are not fatal.
It would be nice to have Medicare support for home caregivers. Necessary skills are minimal (basic trach care, personal care) but are the daily difference between life and death. This is already supported in most or all European nations.
I am still a useful human, trying to use my skills and training to continue to assist others while researching the applicable biology and physiology to better understand what is happening to me. The mental acuity of PALS is very rarely impacted.
It is now clear that ALS is a multi-system disease which means more than just neurons are involved. Research into ALS therefore can be applied to many other diseases.
The show can be downloaded here.