Hal Bailey was diagnosed with PLS in January 2004. Here Hal talks about his diagnosis and his contribution to the DIPEx website, Healthtalkonline:
Of course I was absolutely shell shocked when I heard the news. I went into denial at first but now I am making sure that I live my life to the full. I think it’s fair to say that I’ve adjusted well to the diagnosis.
When the diagnosis was made I knew very little about PLS, or indeed, MND. So, bit by bit we pieced together relevant information, probably like most people.
I first heard about DIPEx in an MND Association publication and put my name forward. The reason for volunteering is that I feel I have been well supported both by the Association and the medical profession and that I want to give something back, and in doing so make the public more aware of MND. As far as I am concerned it doesn’t get the publicity it deserves.
I have also, along with my wife given DNA samples to assist with research, and I am also an Expert Patient at Hope Hospital, which is a teaching hospital. Also I have volunteered to be the Webmaster for the Cheshire Branch in an attempt to promote the work of the Association.
At times, during the interview with the DIPEx researcher, I found it difficult to talk about my disease. Mainly because it doesn’t just affect me it also affects loved ones, probably even more. As much as you try to maintain normal living, compromises have to be made on an ongoing basis.
Learning from people’s experience is an excellent way to understand how a disease may affect your life. I was very happy to tell my story, talk about my emotions and my life if it helped someone else in a similar position.
However I personally have not learnt anything from the site yet. I’m a person who buries his head, and only search for answers on a need to know basis, and I know all I need to at this time. I’m positive that there is a lot of information contained within the site that will be useful in the future.
You can get a lot of good tips and advice from watching the DIPEx interviews on a whole range of topics from death, to equipment, to maintaining close relationships. Most of all it shows you how others are coping with the disease and that you can cope too.
To view the MND section of Healthtalkonline, click here.