barry's map

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irismarie

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This is just brilliant, Barry. THank you for ally our work. I wondered if we could get more morenmore PALS form other sites and forums - if Barry did not mind - to add. I reckon it might throw up something researchers have missed so far. It has every chance of being a discovery tool
I know there is not enough data to have reliable results but so far it seems East coasts are affected more than West? But that may just be cos US is like that. I had heard about Mexico but when you see South America like that.........
Anyone know what demographical/geographical research has been done so far? Apart from Mexico? Will look right away/

Love to all and BRAVO, hats off to Barry
 
Irismarie, I would love it if all of the people on this forum would ask for a pin. Or at least those who have a diagnosis or real symptoms, twitchers come and twitchers go (as they should) so it probably wouldn't help anyone to have them pinned.

I will only pin those who ask for one (cause where would I start or finish?) on the Keeping Track thread

https://www.alsforums.com/forum/wel...89-keeping-track-who-where-23.html#post119680

ALS Forums Member Map - Google Maps

We have all of the continents represented on the map except South America (Hola everyone!) and Antarctica (I may walk like a penguin but I am not a penguin!). I am open to others from other sites being on the map but it might be more difficult for me to keep on top of it.

Anyway it is fun for me so I will keep on for as long as anyone wants it.

Barry
 
NOw that is interesting!No-one in Antarctica! Wonder if the researchers have noticed that;-)

Have written to MND assoc asking for information on demographic/geographic research. Hope that is not yet another letter that will be ignored!
Love ya, Barry
 
That map really wouldn't work as a tracking for a diagnosis of ALs as people like me are on it. I was related to someone with ALS, I never had it. Same with Rosella. If it helps for tracking you can take me off(sob).
 
Not so. Your Pals and you are inseparable
 
I actually got a reply about demographic research. It says little. the statistics link showed nothing except figures of deaths and cases in UK
If this is the best they can do then no wonder there is so little progress


"Researchers believe that the numbers of people developing MND/ALS and living with the disease are the same across the world. They generally quote this as the ‘incidence’ and ‘prevalence’. The incidence describes the number of new cases each year in the population (generally quoted as 2 people likely to develop MND per 100,000 population). The prevalence is the number of cases of MND at one time, this is generally quoted as 5 people in every 100,000.



The demographics of the population is an important consideration in these figures, they assume a mixture of ages. If you were to look at a generally older population then the numbers would be different, as people are more likely to develop MND/ALS as they get older. I am attaching a copy of the Association’s information sheet on statistics for your information.



I had not heard that there were higher levels of people with MND in Mexico, there is very little information on this in the published scientific literature. The one article I found suggested that the numbers in Mexico were likely to be the same as in the rest of the world.



Researchers are very interested in the south Pacific island of Guam. Some residents of the island develop an ALS/Parkinson’s Dementia like complex. As the name suggests the condition includes symptoms of MND, dementia and Parkinson’s Disease. In the 1960s unexpectedly high numbers of people with MND and people with ALS-PDC were found. Although there are now average numbers of inhabitants with MND, the numbers of people with ALS-PDC remains high. There has been a great deal of research to understand why they are so susceptible. Influencing factors include their unusual diet and a particular type of bacteria in their water supply. It still isn’t known for sure and research is ongoing.

I hope that this answers your queries. If not, please do get in touch again."
 
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