Knowing very little (read – nothing) about this condition, except that Joost has it, I got straight into it with my questions and it’s an honour to be able to help spread the word, and you can help too. Please read, learn and share this around, specially so that members of the public can get involved in supporting the organisation.
What is motor neuron disease (which I expect you have been asked hundreds of times over)
Motor neurone disease (MND) is the name given to a group of related diseases in which there is progressive degeneration of the motor neurones in the brain and spinal cord. Motor neurones are the nerve cells that control muscles, and their degeneration therefore leads to weakness and wasting of the muscles.
This wasting generally occurs in the arms and legs initially, with some groups of muscles being affected more than others. Some patients with a particular type of MND may develop weakness and wasting in the muscles supplying the face and throat. This can lead to problems with speech, chewing and swallowing.
Amyotrophic lateral sclerosis (ALS) is the most common form of MND, this is commonly referred to as “Lou Gehrig’s disease” in the US.
What initial symptoms should a person look out for?
MND can present itself in a number of ways, depending on the particular group of muscles which are initially affected. Initial symptoms can include wasting and weakness of muscles of the hands or weakness and stiffness in the legs with a dragging of one leg.
There may also be difficulty with speech and swallowing early on. The disease may remain stationary for some time or may progress to other limbs, to the tongue and to the breathing muscles. The rate at which MND progresses varies from one person to another.
Where can the general public find out more about MND?
How can the general public help?
J9 Foundation’s MND Awareness bracelet available at participating retailers and online www.thebeadco.co.za
Go to www.joost.co.za
to donate (We are a registered NPO and can provide a Section 18A Certificate to companies.)
Attend one of our prestigious events
taking place countrywide throughout the year.
You can also donate by SMS – SMSes cost R5. SMS Joost to 40535.
How is Joost doing?
|Joost with Steve Gleason
Joost is doing very well taking into account his circumstances. He is currently on a trip to the United States which will bring him and his J9 Foundation into contact with other warriors in the war against MND; men like Steve Gleason, a former star of the New Orleans Saints football team. Steve was diagnosed with Amyotrophic Lateral Sclerosis (ALS) (another word for MND) just months before Joost’s diagnosis. Steve is a founder of Team Gleason, a foundation committed to bringing quality o flife to ALS sufferers while the search for a cure continues.
ALS, also known as Lou Gehrig’s Disease, was the motivator behind the establishment of the Eleanor and Lou Gehrig Centre*, named in honour of the New York Yankees baseball player who succumbed to the disease. Joost’s dream is to establish a similar centre for research and clinical support in South Africa. With this in mind he and his team will meet with center director Dr. Hiroshi Mitsumoto. It is one in a string of meetings Joost has lined up with international experts to build partnerships – bringing research and support home.
In Boston, Joost has participated in clinical studies at Massachusetts General Hospital where research into the disease is being led by Chief of Neurology, Dr Merit Cudowicz.
From Boston, Joost and his J9 team will head to New Orleans, home of the Saints Football Team, where he will spend time with Steve Gleason before heading back to share his experiences in South Africa.
He believes, the team will build on the successes of their UK visit where they met with experts at the Euan MacDonald Centre.
My thoughts are often with Joost and I hope so much for him to do well.
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