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Casnica

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Apr 29, 2011
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Loved one DX
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TX
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Orange
Hey everyone! I am new to the forums and I am glad I stumbled upon them in my research of ALS. My dad was diagnosed with ALS in January. He is at the point where he is not walking and barely talking. His uncle died of ALS as well. After genetic testing the doctors said it is just mere coincidence they both had it b/c it is not genetic. I have been trying to do as much research as possible (I just found out about it a week or so ago they kept it secret b/c my little brother was stationed in Afghanistan and didn't want to add stress to him) They won't tell me how long my great uncle survived the disease before passing on just that it was below average time. Is it normal for speech and mobility to go so quick in a patient? Any information would be of a great help.
 
Hi Casnica,

I am sorry to hear about your Dad. Welcome to the forums, you will find lots of support here. I have one question about his doctor's comment about his ALS not being familial. My understanding is that, at the present state of knowledge, only some of the familial genes are known with SOD-1 being the most common. In other words, I didn't think familial ALS can be ruled out positively, only the known genes. I may be mistaken and someone more informed may be able to clarify this.

John
 
Hi, Casnica.

I too welcome you to the forum and I am sorry to hear about your father. I don't have anything to add to what John1 said about the genetic testing other than to say that my understanding is similar to his: some genetic markers are known for ALS, others are currently being researched, and others are probably going to be discovered in the future. Therefore, we can't entirely eliminate genetic possibilities. We can only confirm or deny the presence of the genetic causes we know about.

As to whether your father's progression is normal or not, that's impossible to say without a lot more information. Additionally, each ALS patient progresses at his/her own rate, so the statistics you find when you do research are expressed in very broad ranges. How fast different abilities are lost depends on where the disease starts, the sequence in which various areas of the body are affected, and the general speed of progression in the patient's specific instance. In short, the best we could give you, even with more information, is a very broad guess.

Once again, welcome to the forum and I hope we can be some help to you in the future.
 
Sorry you're here but welcome to the forums
 
Welcome and sorry to hear about your Dad. I agree with John and trfogey regarding the limited known genetic markers.

The only way to rule out familial ALS is through family history. If your Dad's biological parents lived long enough and didn't develop the disease then his case is sporadic, not familial.

-Tom
 
First, I'm sorry you have to be here, but welcome.

On the topic of familial ALS, I have a bit to add to what trfogey said. My first neuro had the genetic test for SOD-1 done because I had an aunt, cousin and grandfather (all on my dad's side) die of this. The neuro I saw for the 2nd opinion/official diagnosis said that researchers are finding more new genetic links to ALS every year. He still thought mine was familial.

Try to locate an ALSA chapter in your area. They will be able to help in many areas. As for great support and advice, you've already found the jackpot. I'm still kind of new at this, but there are many, many knowledgeable people here on this forum that have already helped me a great deal.
 
Thanks everyone for all the advice. I am most likely going to get tested for the SOD-1 gene as well. I talked to my uncle and he is going to do the same. I doubt my brother or my sister get tested but I also have a child I would like to know if I could at least pass on the SOD-1 gene to him. I am still trying to find a way to talk to my son about the disease and what is going on with Grandpa. I am looking for ALS Chapters in my area that I will be able to go to and get support. I am really lucky I stumbled upon this site. I have read through posts and I am keeping a positive attitude as much as I can. I again thank all of yall. :mrgreen:
 
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