Research into the neurodegenerative condition known as Guam ALS-Parkinson Dementia Complex (ALS-PDC) has tended to find itself slightly isolated from the mainstream MND/ALS research world (‘isolated’ being a good word given that the location of the island itself) but I’ve had an interest since I was first introduced to the subject as a PhD student a quarter of a century ago.
This topic was raised once again on day one of the International Symposium on ALS/MND.
The Guam Story…
For those of you not familiar with this fascinating and convoluted story, the science writer Wendee Holtcamp has written an excellent article on the subject but in a nutshell (an ‘in joke’ for those who know the Guam story) the basis of the hypothesis is that a toxic molecule called BMAA (beta Methylamino-L-alanine) is produced by certain forms of blue-green algae. The theory goes that the residents of Guam for a while were exposed to higher than usual levels through their diet, which led to a high incidence of ALS-PDC on Guam in the 1950s and 1960s.Read More »
The MND Association’s Director of Care (South), Karen Pearce, gives her thoughts on one of the clinical sessions on the first day of the Symposium.
I have just listened to four really inspiring presentations in the Holistic Care session – co-chairing with Jennifer Armstrong (Lois Insolia ALS Center – Northwestern University – Feinberg School of Medicine).
It struck me that so much of what we do is based on conversations, the ability to communicate in a sensitive way. The session highlighted how important it is for health professionals to have the skills to talk about very difficult issues early in the disease progression and to also work with the communication difficulties so many people with motor neurone disease (MND) experience.
Could there be a small number of people for whom there is a pause or a reversal in their disease progression? A talk at the Symposium on Friday afternoon from Dr Rick Bedlack (Duke University) looked into this very topic.
There have been few studies looking into the changing nature of motor neurone disease (MND) progression, so it is unknown how common this is.
This pause or reversal phenomenon in their MND or amyotrophic lateral sclerosis (ALS) is reliant on data from validated outcome measures such as Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R) scores.Read More »
While muscle cramps are a very common symptom of motor neurone disease (MND) there is currently few effective ways of management and treatment.
Even though muscle cramps are frequently reported, not a lot is known about this symptom, as research has been limited. You could say they were the Cinderella of MND symptoms – lacking attention and their moment under the spotlight compared to other symptoms.
A lack of research means we do not know how frequently people who have MND experience muscle cramps, how severe they are and whether the nature of the muscle cramps change as a person’s ALS progresses.
It is important to study this symptom, as successful management of muscle cramps will impact on quality of life.
A change in focus – Cinderella symptom no more!
A team at the University of California carried out the largest research study to date on muscle cramps in ALS, and Dr Bjorn Oskarsson (pictured) presented their work on the first day of the Symposium.Read More »
Adult onset condition, those with genetic mutations associated with the disease don’t get it until they’re adults, starts in one place and then it spreads, once it occurs the progression is usually relentless…. what condition am I describing?
Professor Neil Pearce’s point in his talk at the opening session of the International Symposium on ALS/MND was that he was describing both motor neurone disease (MND) and also cancer. Although the conditions are very different, as an epidemiologist, spotting patterns and trends to help identify the cause of diseases, it gave him food for thought.
Working with Prof Ammar Al-Chalabi, he decided to apply a method used to help give a framework to understanding the causes of cancer to MND. “The originality of this work is not from the method itself, it comes from applying it to MND” he explained. Beginning by reminding us of work that he reported last November, he went on to describe further work in this area.Read More »