29 years ago [aged 38] I was diagnosed with MND. I joined the Association when it was formed in 1979 and have been an active member wearing many different hats since then. At present I am fundraising and an Association Visitor.
After my diagnosis, I was not informed what MND was and only discovered the truth from a book in my local library. Eventually I was told I had around 3 years to live, to give up my work and to go out and make the most of my remaining life. Fortunately, information, attitudes and research have changed and I am sure a patient would not be told that today.
The main discomfort I have is from muscle atrophy and cramp to my hands, arms and legs. For this I take quinine tablets and the discomfort is solved. I have always resisted any other form of medication, although it may help some people. I always warn patients I visit, of spending large amounts of their time and money on so called "wonder cures or drugs" from around the world. I fully appreciate how patients will pay or do anything for a cure but please be very wary of unfounded or extravagant claims.
A further tip I would pass on is to vigorously confront your local authority if you think you are not getting the services that are your rights. Sometimes they can be very slow in making decisions about your needs and fail to realise that MND is a progressive disease. Even today, I still hear of GP's giving out poor advice and being unaware of the special requirements of MND patients. Remember it is your life they are dealing with.
Having lived and worked with MND for nearly 30 years, I believe I am one of the very lucky ones. This is the main reason why I will always keep involved with the Association as I feel sure we are getting closer to finding a cure for this most distressing of all diseases.
After my diagnosis, I was not informed what MND was and only discovered the truth from a book in my local library. Eventually I was told I had around 3 years to live, to give up my work and to go out and make the most of my remaining life. Fortunately, information, attitudes and research have changed and I am sure a patient would not be told that today.
The main discomfort I have is from muscle atrophy and cramp to my hands, arms and legs. For this I take quinine tablets and the discomfort is solved. I have always resisted any other form of medication, although it may help some people. I always warn patients I visit, of spending large amounts of their time and money on so called "wonder cures or drugs" from around the world. I fully appreciate how patients will pay or do anything for a cure but please be very wary of unfounded or extravagant claims.
A further tip I would pass on is to vigorously confront your local authority if you think you are not getting the services that are your rights. Sometimes they can be very slow in making decisions about your needs and fail to realise that MND is a progressive disease. Even today, I still hear of GP's giving out poor advice and being unaware of the special requirements of MND patients. Remember it is your life they are dealing with.
Having lived and worked with MND for nearly 30 years, I believe I am one of the very lucky ones. This is the main reason why I will always keep involved with the Association as I feel sure we are getting closer to finding a cure for this most distressing of all diseases.
