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momtoandi

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Joined
Nov 10, 2006
Messages
4
Reason
PALS
Country
CA
State
New Brunswick
City
Miramichi
Some of you may remember my mom, Leah--"Granny" to you all, who passed away with bulbar ALS last February. Our family has been doing well, and in fact mom will be getting a new grandchild any day now. It makes me sad that she will not be able to rock this little fellow every day as she did my first, who is 19 months old. This first Christmas without her will be hard, especially for my Dad, who was so committed to her and cared for her with such devotion.

What is really strange is that another neighbour has been diagnosed. We live in a very small rural community, and a couple of years before Mom a woman about a mile up the road was diagnosed and later passed from bulbar ALS. Then my mom. Now a gentleman about 3 miles down the road has been diagnosed with bulbar ALS as well. His sister was one of mom's best friends, and it has made us both sad and questioning. Our hearts break for them because we know what is ahead of them. It also makes us go hmmmmmmmmmm--......there was also another case a few years ago just a few miles away, so there have been four cases in a very small rural area within a few years. I know there is no answer to why, but it just seems too strange and co-incidental.

P.S. Al--we read the article on you in the Globe and Mail this summer while at the cottage--I said to my Dad that that was "Al from mom's message board" and he was quite excited to think we "knew" you. Thank you for sharing your story and giving ALS a face.
 

Al

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Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi mom. I know this is a hard time of year when you have lost loved ones. I have lost 2 brothers in law in the last 5 weeks. It makes it tough to get in the Christmas spirit.
That really is strange about the number of people with ALS in your area. Is there any concentrations of chemicals there or environmental toxins?
Hoping you have a Merry Christmas and thanks for the update.
AL.
 

Thumbs Up

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Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Hi Momtoandi, I was born in Beresford, NB. Do you know Dianne O.Neil?
 

CindyM

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Messages
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Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Mom- we miss Granny- I am sure you do to. Very interesting statistics from your little community. Makes me wonder what these clusters mean...Cindy
 

momtoandi

New member
Joined
Nov 10, 2006
Messages
4
Reason
PALS
Country
CA
State
New Brunswick
City
Miramichi
Al, my dad certainly believes there is an environmental link, but who knows what that is--there are so many possibilities and nothing blatently evident. Scary for those who live here though.

Don't know Diane O'Neil--is she a PALS from this area? My best friend is an O'Neill (with two l's!)....

Thank you for letting us know you miss my mom--it is nice to know she is remembered here. :)
 

Thumbs Up

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Joined
Nov 22, 2007
Messages
95
Reason
Lost a loved one
Country
ca
State
Ontario
City
Northern Bruce Peninsula
Familial ALS

We have familial ALS. Dianne O'Neil is my cousin. Her dad had ALS and so did my aunt, his mom. George O'Neil, my aunt Melvina O'Neil and now my cousin Raymonde Godin. Raymonde is still living with ALS. And my other cousin in Nfld is being diagnosedz. He is suppossed to be going to Montreal for more testing. Check www.ALSSociety of Canada
under the Provincial sites "New Brunswick" This is where the "March of faces" can be found.

By the way Al, my cousin George O'Neil was also a firefighter. If I'm not mistaken, he was the fire chief.
 

caroliney

Active member
Joined
Apr 27, 2007
Messages
84
Reason
Loved one DX
Country
US
State
South Carolina
City
Goose Creek
ALS Registry Act could help

Hello,
Sounds like we need a National ALS Registry source here too. The key element of a National ALS Registry is to populate it with ALS cases that are identfied throughout the entire region.
United States is funding nearly $1million of existing funds to begin pilot projects that will evaluate the science to guide the creation of a national ALS registry.
Two goals; 1. Develop and test strategies to efficiently identify ALS patients; and
2. Determine effective ways to obtain and share data from existing
sources, such as ALS Association Chapters, the Department of Veterans
Affairs ALS Registry, ALS Association certified centers and ALS Clinics, and
the Centers for Medicare and Medicaid Services.
I pray this data sharing will find the cure and the eliminate ALS.

Hugs and Best Wishes for a Happy New Year,
Caroliney
 
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