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Recent changes to Medicare are drastically reducing the ability of the most vulnerable people with disabilities to communicate.th

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 

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End of Life Guide

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.End of life guide cover

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.”

You can download the guide from our publications page or contact our MND Connect helpline to order in print. The guide is free for people with or affected by MND.


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American Jesus

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Lou Gehrig meets the Marx Brothers

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I Ramble … These are the kinds of technologies that are being denied people with ALS. We need to fix new mandated Medicare rules.

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The Film FIGHT TO LIVE by two time academy award winner Barbara Kopple is premiering on cable, iTunes and Netflix starting January 15th!  

 For everyone whose lives have been touched by Cancer or terminal illness, this is a film that you must see.  We cannot beat these diseases without change!

 The film will be available on Video on Demand at Time Warner Cable, AT&T Uverse, Cox Communications, Comcast, Google Play and more!!

Don’t wait until you are in a fight to live to find out how broken our system is.  Watch this and pass this on so we can win the war on Cancer and other terminal illnesses!!

Check out the trailer on iTunes or YouTube TODAY! 

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How Meditation Can Help Manage Stress and Improve

Originally posted on Rambling Man of ALS:

Many people think that meditation has to do with certain religion, this is not true. In fact meditation is nothing to do with religion. Anyone, regardless of his or her religion, can practise meditation and enjoy the health benefits from it. Meditation can help you to improve your mind function and overall health.

Meditation has been proven to reduce stress levels and it can even help with conditions such as high blood pressure. What I love about practising meditation is that it can help me to calm my mind and help me to concentrate better. This also helps a great deal in my work career as I can focus a lot better and able to see opportunities that come across my way.

 Another great benefit of meditation is that it makes you to be aware of good health and this allows you to make healthy choices in your lifestyle.


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