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.”
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.
I Ramble … These are the kinds of technologies that are being denied people with ALS. We need to fix new mandated Medicare rules.
“Why Me”? “Why Me God?”
These words, two separate questions so frequently heard but seldom answered. Surrounding those questions are; Do I say this under my breath because I’m selfish? Do I say this out loud because I’m asking for mercy? Do I repeat it over and over because I demand an answer? Who is responsible and where can I find the answer? “How could this be happening to me?” “Where is God in all of this?” “Why Me?”
So you have just been diagnosed with a terminal illness called ALS. There is no cure! Mixed medical definitions related to ALS only make it worse. No one is sure what journey they will have or what the suffering level will be. I like to compare it to your basic weather forecast which takes a tragic storm in different directions. This life-threatening illness is also a transition, an invitation to a new phase of life that is precipitated by changes in the body, changes never imagined. There is no turning back, and everything you do will be focused on ALS. This is your new battle, one you have never fought, but one you seriously need to prepare for, trust me.
The reality of this ALS diagnosis is that from the very beginning you and your soul will have a new relationship. Your ALS diagnosis is very similar to a life or death surgery which most have explained as their first soul event. Whenever the line from health to illness is crossed, the soul is awakened. Many questions start to surface, questions we never thought our soul was capable of asking.
We lose our connection to normal as our mobility fades, we are no longer the same. Only you are going to experience this feeling and it will be shared by those around you. You and your circle of friends are going to seek every explanation available, and start an endless search for information.
In the search for the “Why Me” we find ourselves talking to our soul level where we see clearly what matters and recognize the reality of our situation. Some will withdraw from life to a point where going to a support group is totally out of the question. And those around you, think they understand what this diagnosis feels like, but the patient is the only one who really knows.
This new disability excites the mind in new ways. There is the before, which will never come back. There is the after, which will always have the bittersweet tinge of “Why Me”, even in the sweetest of moments.
I Ramble …. Buckle – Up, enjoy the ride.