How to manage Motor Neurone Disease: A customer's overview of this condition

Hello, I'm Ian. As a customer of Bluebird Care Northumberland South, I have been invited by the director Wah Akram to say a little about myself on this website. 

                
With Care Supervisor Allison                                          With Care Manager Sue

About fifteen months ago I was diagnosed as having Motor Neurone Disease (MND). Thus the purpose of my contribution is mainly to highlight this relatively little-known condition; and also to tell readers how I manage this condition and how Bluebird Care helps me to do this.

Motor neurone disease is a nasty condition. In my view it is akin to cancer in its insidiousness and its effect on a person's life. This type of MND is known as 'Primary Lateral Sclerosis'. It affects 2% of people living with Motor Neurones Disease. This affects the Upper Motor Neurones only (those between the brain and the spinal cord).

Symptoms of MND include the lack of ability to swallow, muscle wastage and deterioration of speech.

The condition seemed to manifest itself noticeably after I had an operation on my foot. A few months later I went ahead with a second knee replacement, despite warnings by the MND specialists. They were right in their reservations. The operation did result in decreased mobility, but at least the constant pain in that knee was gone.

So there could be some truth in the view of experts - that people with MND generally don't do very well after surgery.

So how do I manage this condition?

Of course I have to accept a new way of life. I cannot walk as I did before. I cannot travel outside in the same way as before. But I have considerable help from social workers and carers.

I am thankful for many things, including that the condition has struck me relatively late in life. I am 72 years old. Also I feel fortunate in being a British citizen. As such, hospital care and social services support are free to me. Many people criticise Britain's National Health Service, but I still feel that it is a wonderful organisation.

I am thankful that I have my own place - and most importantly, that I can stay in it - thus to retain my independence. My independence is so precious to me. The staff at Bluebird Care play this crucial role in enabling me to keep it.

My mobility is of course now more limited. But I try to walk - with aids - as much as I can. The carers have exactly the right approach, in allowing me to do as much as possible myself, then intervening at my request. Such an approach is, I feel, conducive to maintaining independence for as long as possible.

How do I cope with my condition?

My approach is a bit of a mixture really. What works for some, might not work for others. I have various sayings which I repeat to myself, such as: 'never give up - keep going'. I take the view of 'Mind Over Matter' and 'Where there's a will there's a way'.

So thank you Bluebird Care! I hope that my comments have been of help, in some way.


If you or a loved one wishes to discuss some homecare support options with Bluebird Care Northumberland South, please give us a call on 0191 2502244.