Motor Neurone Disease Blog
Locating Support for Motor Neurone Disease Sufferers – tell us your opinions in our Patients Voice Blog
It is being run, in fact, on behalf of one of our staff members. In April 2007 one of us found out that his mother-in-law was diagnosed as a motor neurone disease.
MND is the British name for the condition. This can cover the following condition amyotrophic lateral sclerosis (ALS) or Lou Gehrig’s disease, progressive muscular atrophy (PMA), spinal muscular atrophy (SMA), progressive bulbar palsy, pseudobulbar palsy, and primary lateral sclerosis. So please contribute if you, friend or family member suffers from any of the above.
For her and all her family this came as a tremendous shock. Firstly they looked for more information as to what to expect over the course of the next few months and years. Secondly she wanted to make contact with other people who were living with motor neurone diseases – to share and learn as well as get support.
To help her and all Motor Neurone Disease suffers we have decided to open this blog. This is an opportunity to gain an understanding of how patients with Motor Neurone disease are supported around the world and how this could be improved.
This is an opportunity for you to tell your story. About the symptoms and diagnostic process
But most particularly we are interested in the following kinds of question:-
• Where did you seek support and information? How useful were healthcare professionals in this process?
• If you went online which resources did you find and would recommend? How valuable was the information you found?
• What advice would you give to a fellow patient or one of their family members?
• How could healthcare professionals improve the service they provide to you and others?
Please feel free to contribute your thoughts and share your experiences. All you need to do is type a nickname of your choice and the put your comments into the box. Your comments are anonymous of course!
I look forward to reading your comments and if you know of any other carers who might like to contribute their thoughts please feel free to send them either this email or the link to the blog.
Best wishes
Belinda
