Patient perspective: I’ve got motor neurone disease, motor neurone disease does not have me

David Needham

What part of the world are you from, and what age group do you fall into?
I’m 46. I was born in the UK and have always resided here. My heritage is Anglo-Canadian.

What medical condition are you affected by?
Sporadic motor neurone disease (MND). The form is most likely to be amyotrophic lateral sclerosis (ALS).

When were you diagnosed?
Early 2012.

What is involved in managing symptoms now?
There is no symptom management in place really. It’s more a case of figuring out how to continue to be independent as the disease slowly progresses. So far I have found a way to compensate in most cases.

How is your daily life affected?
I use Allard BlueRocker braces. Originally these were to allow me to continue to walk. Now I only use them to allow me to get into an upright position. I can cover very short distances on my feet using crutches and the braces. This is now limited to moving around the house and getting to the car.

Beyond this I’m a full-time manual wheelchair user. I now rely on my wife to help with doing up buttons and on bad days, other assistance with getting dressed is required.

Has your outlook on life changed?
Yes, but probably for the better. It has helped me to focus on the positives and dismiss the negatives. I do not really have any negative feelings towards MND. I see it very much as a wake up call.

How has your care been since diagnosis? Have there been any good care or conversely any bad care?
For the most part the medical professionals that I have encountered have been exceptional. Most very quickly realised that leaving me to it and taking a back seat was the right way forward. One or two still haven’t though and although I know that their intentions are good, I do get irritated by their rather blinkered approach. We’re all different though and I’m sure others will have the opposite opinion.

Are there any positive aspects to the disease or your life living with the consequences?
I don’t really dwell on the negatives. If it wasn’t for MND, then I wouldn’t be playing Wheelchair Rugby, which is a great game. I wouldn’t have met the guy’s at the Leicester Tigers Wheelchair Rugby Club and have the close association with Leicester Tigers Rugby Club.

I would not have encountered the personalities of the people involved with the Leicester City Integrated Living and many other similar organisations. I would not have any comprehension of the day-to-day difficulties that people with disabilities face. There are financial worries stemming from no longer being able to work, but not being able to work means that I can train and play more sport. Something that I’ve always loved.

If you could give one piece of advice to the healthcare professionals that you have come into contact with what would it be?
Offer help and advice willingly, but only when you perceive that it is really needed. Be open-minded and don’t always assume the worst, even in such circumstances. I have felt uncomfortable having to manage some rather rigid perspectives from a small number of medical professionals.

While I fully accept my diagnosis, that does not mean that I have to accept the prognosis. Some medical professionals have interpreted this as a form of denial, but the reality is quite the opposite.I have motor neurones disease.

Motor neurones disease does not have me.

David Needham is married with three young children and lives in Leicestershire. He is a former IT professional and all round sports fanatic

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