If you are coping with ALS, and you follow events closely, you obviously have heard of the new group that call themselves, Stem Cell Pioneers. These are brave folks who are willing to travel abroad to receive stem cell transplantations. A growing number of them are traveling annually to places such as Mexico, Portugal, China and the Caribbean in search of cures. One such pioneer sold his home including cars and moved to Argentina. There, for more than $100,000, a doctor is giving him a yearlong experimental course of treatment using his own stem cells.
Web sites are abuzz about a doctor in Beijing, China who has transplanted nerve cells from aborted human fetuses into the spinal cords of more than 400 patients, including a dozen Americans with spinal injuries who paid $20,000 for the procedure, and the clinic is being flooded with inquiries. These pioneers are Americans afflicted by devastating diseases with hopes that are raised by talk of stem-cell advances. There is a simple reason these treatments aren’t offered in the U.S. To date, there is no evidence they work.
How do these ALS Pioneers arrive at a decision to take such great risks? Are they placing hope in underground science? Committing brave acts for love ones or looking for an extension on life? Could it be that they fear death that sets off this vintage frenzy? Death is the great equalizer, we know it happens to everyone, but we think everyone means everyone else. Anytime we talk about ALS, death lingers in the background, but is not necessarily fatal. ALS patients, given enough time, will move past that fear and go to a place similar to what some call “Nirvana”. “Nirvana” may be the place ALS patients find courage going forward against all odds.
The finality of death, coupled with the uncertainty of an afterlife, results in fear, for most. But for one such man they called, “Stem Cell Man”, Mr. Jerry left his fears at the door as he checked into his “Nirvana” called “Eden” located in the blue skies of Belize, Central America. The place where Iguanas run free at day-break and Monk Parakeets sing in a choir until dusk. Where endless shades of Hope run along side joy and laughter. Where smiling doctors and staff sooth patients with countless hugs that start and end each trying experimental day. Is this only one more five star medical resort of Hope practicing without any guarantees?
This Stem Cell Man had an inspiring ability to accept the physical challenges of ALS as opportunities for personal growth led him in a new philosophical direction. Nonetheless, his journey with ALS was agonizingly poignant. He gained that uncommon perception about how to live fully in the face of fatal illness and hopelessness. Through his own Spirituality he tasted and savored the sweetness of every day in his “Nirvana”.
Before death, with his failing hand, Mr. Jerry scribbled on his Magic Slate.
“I am here to acquire knowledge and skills to improve my soul and in the lives of others. I will be challenged to learn lessons by meeting these challenges. These lessons will help me in future challenges.”
I Ramble … The words spoken here were clearly one man’s inner vision of his spirituality, guiding him as only the soul can.
As of April 1, 2014, Medicare began denying payment for many of the medically necessary speech generating devices used by people with ALS (Lou Gehrig’s Disease), Cerebral Palsy, Spinal Cord Injuries, and other impairments, when they enter a health care facility, such as a skilled nursing home or hospice. Taking these highly specialized devices away leaves them no way to communicate at a vulnerable and terrifying time.
On September 1, 2014, many severely disabled individuals will have all contact with the outside world cut off. For many years, Medicare allowed individuals using Medicare-provided speech generating devices to use their own funds to “upgrade” the devices. This allowed them to communicate beyond the confines of their room through email, internet, and text messages. After September, Medicare will no longer pay for any device that has the potential to be upgraded to allow communication outside the room
Currently, Medicare routinely denies coverage of the critical eye-gaze technology necessary by some people to operate these speech devices, even when its medical necessity is well documented. They have no way to communicate as a result. After years of waiting for an appeal to Medicare, the eye-gaze coverage is routinely allowed, but individuals should not be forced to wait years without a voice.
I Ramble … Let Voices Be Heard
Life with MND is delighted to announce the arrival of it’s new publication, End of life: a guide for people with motor neurone disease. The new guide provides comprehensive and candid information on how to plan ahead, in response to feedback from people with or affected by MND.
Dr Bee Wee, National Clinical Director for End of Life Care at NHS England called it: “a much needed guide that will act as a bridge between families affected by MND and the health and care professionals who support them.
“It discusses complex decisions using honest and straightforward language, yet with sufficient detail to be genuinely helpful…This guide will help people to feel more in control of the options available to them.”
One of our priorities is to ensure more people with MND, wherever they live, will be able to access specialist palliative and end of life care. This includes providing better information about the options and services available at end of life.
We hope this guide will help more people with MND, their families and carers, to better navigate and manage their end of life care.
The new guide includes:
- the benefits of planning ahead
- how to communicate your wishes, preferences and needs with family, friends and health and social care professionals
- how to access support
- how to put personal affairs in order
- information about medical treatments and what can be done if they are no longer helping.
A person living with MND: “I found this extremely helpful. Especially as a springboard for further discussion with professionals.”
I Ramble … These are the kinds of technologies that are being denied people with ALS. We need to fix new mandated Medicare rules.