familial connection

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donnainwash

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PALS
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uni
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Washington
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Elma
I am new to this web page and not sure how to navigate around. I would like to hear from people who had a parent with als and now have come down with it.
I have been diagnosed since September. I seem to have the same progression but at a slower pace. thanks for any information:?
 

Al

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Hi there. If you click on the search tab above and type in familial there are quite a few posts on familial ALS on the three pages there. A good place to start. Welcome. AL.
 

ahpeditor

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Donnainwash,
Sorry, it looks as if I've hijacked your post. I'm not sure how I posted in the wrong thread, but I did. I'd delete it but I'm not sure how.
 

Al

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No problem. I took care of it.
 

arlie

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10/2007
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ca
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ontario
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hi i have familial als-diagnosed oct 07
-my father's started in his mouth like me and my brother in his legs
right now i am trying to sort out my life
i wish you lots of luck and stay in touch with me-arlene
 

Thumbs Up

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Familial

My mother started with her legs. My sister had bulbar first. I think the others all started in the legs, Roberta is so far the only bulbar. Also it does strike both male and female. At least it has in our family. I mention this because of a previous post someone mentioned that it only struck females.

I spoke the other day to my nephew. My sister Roberta's only son. He was 12 when she died in 1996. He is now 23 and has a girlfriend. It pains me that he told me he does not want to have children in case he passes this awful disease to them. What a shame.

Lets hope that they have a breakthru soon. I am still trying to get in touch with Dr. Guy Rouleau in Montreal to check the progress of the familial study. I will try to get more detail and anyone interested in contacting him for additional family studies I can give you the information.
 
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Thumbs Up

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Familial Research

Hi all, If you are interested in joining the research of Dr Guy Rouleau at Montreal General Hospital in Montreal go to "ALS Society of Canada" and check out Provincial ALS Sites. New Brunswick. Als research . contact is [email protected]
Im not good at giving these directions. Hope this helps
 

arlie

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Dec 18, 2007
Messages
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Diagnosis
10/2007
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ca
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ontario
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toronto
hi my name is arlene and i have familial als-both my brother and father died from it

i was diagnosed in oct 07-and my speech and eating are affected

i live in toronto
you can ask me anything you want to
 

mammaberger

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sask
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saskatoon
Does familial als always show up in the genetic testing. To the people with familial als did you have the testing done or was it by being diagnosed that made you aware of the family connection. It would be a hard decision to get tested, I am already so emotional and to think if I found my son could be passed on this disease, I would not want him to grow up in fear. When there is a case of als and you are the first to get it do they do genetic testing to see if it's familial?
 

l2c

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CALS
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n/a
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Florida
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Both my husband and his sister had ALS. Both were tested for the only known familial genes and did not have them. My children have been told by the genetic counsellor that they have a 50/50 chance of inheriting whatever gene it is which caused my husband and his sister to get ALS. But they were also told that since we have not seen the disease in each generation it is very possible they will never actually come down with the disease even if they have the gene......in other words, no one really knows enough about ALS to foretell anything.
 

CindyM

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in other words, no one really knows enough about ALS to foretell anything.
Nobody seems to know much about any aspect of this horrible disease. Not how people get it, not why some live longer than others, not even how to test for it. Sorry for the rant but sometimes it gets to me that so little research is being done.
 

Cindy S.

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Loved one DX
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Virginia Beach
I'm new to this so bare with me. I've also been dealing with this FALS for a little over a year now and trying to bury my head in the sand but it's very hard. My grandfather died of ALS in 1985, the first in his family, age 53, and about 2 years after diagnosis. His family had never heard of the disease before my grandfather was diagnosed...so where did it come from? We found out last April (2007) my mom has it (she's currently 5. She is currently having a lot of pain and I'm trying to research what other ALS patients do to get through it. My mom has a sister she's distanced from but we do know so far, she has no symptoms or the disease. I have a sister and a brother. Between my sister and I we have 7 children. Because of the FALS my brother has decided to not have any children. I know of the people that get ALS, only 5 to 10% of them have FALS; I'm hoping to see other family stories like ours on this forum. But not really because it's such a terrible disease. I'm scared to pieces but have put my faith in God and TRY to live my life as fully as I can. Cindy
 

Marjorie R. Wilcox

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Nov 21, 2007
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10/2007
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New York
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Richmondville
familial ALS

Rick's ALS is believed to have come from his mother who had a motor neuron disease. At that time in the late '40s they called everything MS. Rick's neurologist thinks he has ALS and probably his Mom did too. Nothing much was known about ALS then.

Rick and I, his wife, realize that he probably inherited most of his mom's genes, since he has no history of heart disease like his two brothers who are like their dad. Rick has something very wrong neuroligically like their mom.

His first symptom was severe sleep apnea and problems walking without staggering. Now he has deterioration of the leg muscles and toe twitching.. increasing problem of lack of sleep breathing.

Hope this is helpful to you. marjorie
 

DeeMichelle

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Lost a loved one
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Hertfordshire
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St Albans
Fals

Hi

I'm really sorry to hear that you have FALS.

My family has familial ALS. My Dad has Bulbar onset and my mum, bless her is doing all she can to help him.

My Dad's brother recently died of ALS and he lost the use of his legs so a different manifestation to my Dad. I also have three aunts who had FALS and two of them had Bulbar symptoms like Dad and the other lost the use of her legs and used a wheel chair.

We feel sure my Grandfather had it, but was not diagnosed. My mum who lived with with my paternal grandparents when she first married remembers that all my grandfather could eat in the end was corned-beef-hash (sloppy mash potato lots of butter, milk and bits of corned beef) and that my grandfather never got out of bed except when my dad carried him.

So that's our story.

Best Wishes

Dee
 

arlie

Member
Joined
Dec 18, 2007
Messages
15
Diagnosis
10/2007
Country
ca
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ontario
City
toronto
hi i have famial als
both my brother and father died from it
i am a middle aged woman with 3 kids who are scared

would be nice to hear from you-arlene
 
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