Son of Deceased PALS...wondering if...

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martin_45

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...other people in my position (I'm in my late 20's, incidentally), worry about getting ALS even though there's no info to suggest it is familial. I think to myself...maybe we just don't know it's familial YET...or maybe it was a mutation that will be passed genetically, or...you get the idea. Basically the glass is 95% full and I'm (occasionally) paying more attention to the 5% that is empty.

It's as if nothing else scares me -- heart attack, cancer, whatever. In other words, probably the things that will actually kill me someday I can deal with.

I definitely think I suffered some permanent psychological damage from watching my father's deterioration. Not anything that I think the leather couch will cure.
 

brooksea

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Martin,

Sorry about your father! How old were you when he passed?

I often wonder how all of this will affect those of us with children.

I hope your family had a good support system in place.
 

martin_45

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Thanks, CJ. I was 21.

I'm not sure how old your kids are, but perhaps it will bring you some comfort to know that my exterior personality (that the world sees) has weathered this storm and I am successful, so far, professionally. My doubts and fears linger beneath the surface instead and seem to creep up only when I find myself with a little too much time on my hands. So I try to rarely find myself with excessive downtime.
 

gimpydad'slady

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Hi Martin_45

I have concerns for my teenager, how will this shape his life? How will this affect his life choice?

We are fortunate that his father is still with us, he was diagnosed 05/07. Our son at first wanted to get the DNA testing to see if the gene was there, and we discussed allowing him to do so. But after much discussion, he decided he did not want to know. He said we had had a good life thus far with his father, even prior to the onset of his disease, and felt that if he knew, and it was positive, that it would alter his life. He felt that living with his father's ALS was enough "alteration" for him.

I am glad he decided against it. I feel that his experiences with his father will make him a better person, and have a better perspective on life than most. We that have this disease in our lives, tend to look at things in a different light, I think.

I think you are right about keeping yourself busy, just don't get so busy that you don't enjoy life.

God Bless! :smile:
 

awieleba

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gimpydad'slady

I did not know there was a gene for als? Can anyone be tested or only if it is in the family?
thanks! april
 

fiddleplayer51

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April,
I posted a reply to Brenda Pitt under the "Welcome New Members-Say Hello" forum yesterday in which I posted info about the DNA test. Here is a cut-and-pasted portion from that post:

I also take it that you've not had the Familial Amyotrophic Lateral Sclerosis (SOD1) DNA Test? Five percent to 10 percent of cases of ALS are thought to be genetic, and about 15 percent to 20 percent of these are caused by mutations in the chromosome 21 gene known as SOD1 (superoxide dismutase 1). The test for determining the presence of this chromosomal mutation is a simple blood test. Here's a link to an article about it at the ALS Association website:

http://www.alsa.org/als/genetics.cfm

Take care,
Jane
 

fiddleplayer51

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April,
I've just replied to your post about the genetic testing, but it contains a link and therefore will not be visible here until a moderator has viewed it.

Take care,
Jane
 

Al

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Just under aan hour to approve it. Not doing bad on this one.
AL.
 

Sammantha

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Hi Martin, i wish there was a way to calm your fears......... My father worked in an aluminum plant and was exposed to lots of asbestos. We were not close and did not see each other most of my life. Well, he ended up taking his own life because he could not deal with his lung issues anymore. When he did that i feared that i was not strong enough to make it through life and that maybe i could give up at some point. This was six years ago. It is very natural to feel that you will die the way your father did, i was not sick or suicidal and i had that thought. If your father died of a heart attack then you may think that you will. You should talk to a therapist about it, they can help you a lot. Maybe talk to a neurologist just to get statistics on ALS occurring twice in the same family....... Noone in my family has had neurological disorders or muscle disorders, and i do have the fear of maybe my children getting it or going through adult life worrying about it. I am going to do what all good mothers do and reassure them that it is impossible for them to have it.... If it is inherited like you fear more family members would have had it, i hope this helps a little.... Sam
 

lostinlouisville

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Sam

Hi Martin, i wish there was a way to calm your fears......... My father worked in an aluminum plant and was exposed to lots of asbestos. We were not close and did not see each other most of my life. Well, he ended up taking his own life because he could not deal with his lung issues anymore. When he did that i feared that i was not strong enough to make it through life and that maybe i could give up at some point. This was six years ago. It is very natural to feel that you will die the way your father did, i was not sick or suicidal and i had that thought. If your father died of a heart attack then you may think that you will. You should talk to a therapist about it, they can help you a lot. Maybe talk to a neurologist just to get statistics on ALS occurring twice in the same family....... Noone in my family has had neurological disorders or muscle disorders, and i do have the fear of maybe my children getting it or going through adult life worrying about it. I am going to do what all good mothers do and reassure them that it is impossible for them to have it.... If it is inherited like you fear more family members would have had it, i hope this helps a little.... Sam

I too had my father kill himself and thought If I was stronger than he. Well you bet ya. All I have to do is remember how angry I was with him and think no one has ever been that angry with me why would I want to start at death when I could not make good. Sorry about your Dad, even if you did not know him well, thats the worse.
 

fiddleplayer51

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Al, thank you. I hadn't seen you listed in the current active users list and was hoping all is okay. Glad to see you!
Jane
 

Sammantha

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lostinlouisville, i totally understand how you feel. My father lived ten blocks from me, but it was like he was on the other side of the earth...... I used to sympathize with people who commit suicide until i had to deal with it. Now i feel once you have children that suicide is not an option. So many people are fighting to live, it seems so confusing that there are people who want to die. Now i can understand when people are at the end of a no hope situation, but his was not hopeless. I love him and i know he will be the first to greet me when it is my time to go, i just hope that i have at least fifty years before that happens! Best wishes, Sammantha
 

DeeMichelle

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April,
I posted a reply to Brenda Pitt under the "Welcome New Members-Say Hello" forum yesterday in which I posted info about the DNA test. Here is a cut-and-pasted portion from that post:

I also take it that you've not had the Familial Amyotrophic Lateral Sclerosis (SOD1) DNA Test? Five percent to 10 percent of cases of ALS are thought to be genetic, and about 15 percent to 20 percent of these are caused by mutations in the chromosome 21 gene known as SOD1 (superoxide dismutase 1). The test for determining the presence of this chromosomal mutation is a simple blood test. Here's a link to an article about it at the ALS Association website:

Hi
FALS is very rare and most people with FALS do not have the SOD1 defect and therefore, have something that cannot be tested for. Whether or not to be tested is a very difficult and personal decision.
Dee
 

emjoi

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My dad died of ALS a year and a half ago.
I went through a year of being completely convinced that I had it too. I obviously don't because nothing developed. I recently discovered that both my mother and my brother went through phases of thinking they had the disease.

It's a disease that infects the minds of the survivors.
And yeah, the thought that I could pass it on to my kids is completely horrifying. I haven't. I'm sure I haven't. But the little fear remains....
 

kelly

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I often worry about my 4 and 6 year old boys worrying about the disease. They often make comments like "I do not want to be like Daddy when I get older". Of course it breaks my heart. I try to explain that this is a very rare thing that Daddy has....but I wonder what they are really thinking. Try to keep open and age appropriate honesty when dealing with this tricky issue. Actually./.........I think every single issue is difficult with this disease. There sure is no rule book. KR
 
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