David's story: Nothing to lose

There are many people around the world with motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS) or Lou Gehrig's disease. Each of these people go through a similar experience physically, but their personal stories can be very different. Here is an open and frank story given to us by a New Zealander patient who found out about an off-label therapy years after he was diagnosed.

Diagnosis

Hello, I'm David and I have motor neurone disease (MND). I was a very successful real estate salesperson. I was very active and I enjoyed the outdoors in my home district. I loved dining out with family and friends, and really enjoyed exploring the New Zealand and going for short overseas trips.

I noticed that my legs were feeling sore and I began tripping over them at times. The time it took for me to go to the doctor, see a neurologist and get the diagnosis of motor neurone disease was only 4 weeks.

Treatment

It is widely known and understood that there is no “known Treatment or Cure” for MND, but the specialists should be able to offer or know of more medicines that “may” help with MND in some way. It's been two and a half years since my diagnosis and I am now in a wheelchair full time. I don’t get to go out very much. Just as well, I like my own company best.

Help is available

I have some contact with other MND sufferers from time to time. The mother of another MND friend told me about everyone.org. I was quite pleased to find out that there may be some type of medicine that will help slow the progression of this disease. I want to encourage anyone in my situation to try to access any new possible treatments – you have nothing to lose!

-David, July 2019