Mom Died of ALS/Should I Get Tested?

[BarryG]

Pidge, I won't comment on the getting tested topic because I already have but as for your computer eating letters check the insert and delete keys. Play around with those two keys and you may find the solution to your letter eating problem.

 

[John1]

I think Hal gave you the best reply. If you don't know if your Mother died of familial ALS, and what form, testing is of little use. If you have a reasonable knowledge of your family history on your Mother's side you can be pretty sure however whether she died of a familial form. There should be several ALS deaths in your family tree.

If I knew that a family member died of the SOD-1 form of ALS, I would certainly get tested. I would want to know rather than spend my life wondering if every little neurological twinge was the start of ALS. I would also take large doses of Vitamin E because a huge Harvard study found a much lower incidence of ALS among people had been taking high doses of Vitamin E for a long time. I have no idea whether it is effective for familial ALS but why not err on the side of caution.

Barry are you in Ajo yet? I just found out that Ajo mean "garlic" in Spanish. Knew you'd want to know that.

 

[BarryG]

John, not yet. We leave on Friday for "Garlic". Speaking of Ajo, my talkers have a hell of a time with any strange word so I have to enter "Ah Hoe" or it comes out "A Joe" and as a Canadian I'm sure you remember "Joe Who?.

How is the weather in Tucson? My sources tell me lots of cold and rain, not what I want. It is snowing here today and too cold for me -15C.

 

[JeffP]

i would do exactly what joel said just live your life to the fullest and try your hardest to get that thought out of your mind thats not living life none of us know if tommorrow will come regardless of als live and show love and be greatful for what you have today just my opinion jeffp

 

[John1]

John, not yet. We leave on Friday for "Garlic". Speaking of Ajo, my talkers have a hell of a time with any strange word so I have to enter "Ah Hoe" or it comes out "A Joe" and as a Canadian I'm sure you remember "Joe Who?.

How is the weather in Tucson? My sources tell me lots of cold and rain, not what I want. It is snowing here today and too cold for me -15C.

Apologies to chrismaya for hi-jacking the thread for a moment.

Who could forget Joe? Come to think of it, lots of people. The weather last week was an aberration. It was cold and we had the first rain since early December; 2 1/2" of it in a hurry. The normally dry washes here were running and one of the "rivers" in Tucson, the Rillito was running. It was over a hundred feet wide on Friday and you could boat on it. On Saturday it was dry. Weird to us northerners. The rain was desperately needed so it was a relief. The forecast for Friday here is near normal (63°) and sunny. You're likely to be fine. Late last night we were woken by a pack of coyotes yipping and yowling outside as they ran up the wash. Chewie's eyes were as wide as saucers.

 

[Pidge]

Okay Barry I will try and remember that it is very frustrating not to be able to correct My mistakes. One more thing on the testing topic & I am done I have a sister inlaw that was tested for MD because they found out her daughter had MD she tested positive which led to early intervention Pt Diet Etc & she is not sorry that she found out early . I think it has added to her quality of life.

 

[daughter01]

My Aunt died of ALS 30 years ago. My Mother died of ALS a couple months ago. She was tested for the So1(?) gene and did not have it. The Doctor told us that of the people that have familial ALS, 90% do not have that particular gene. So it doesn't seem worth it to get that one gene tested. Here in my thinking: If I have it--what will that do to my future ability to get insurance?

 

[halfin]

Daughter01, the Genetic Information Nondiscrimination Act, or GINA, forbids discrimination in employment or health insurance on the basis of genetic information. However, it does not prevent discrimination in life insurance, nor in long term care or disability insurance. So those could be affected, potentially. Some groups face this problem more severely, such as the case of Huntington's Disease where there is a very effective genetic test. I believe they have developed arrangements in which the testing can be done anonymously.

 

[jackbrosnan]

Hello.....
I am david Hood
I have some very difficult moments thinking I have ALS at times. It does not consume my life, but it affects my life. It is up to you to get tested or not but I will tell you why we have decided to have my son tested & then we will go from there. It is very important to understand the limitations of ALS genetic testing.

Thanks.
David Hood
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[jackbrosnan]

hellloooooooooo

 

[jackbrosnan]

Helloooooooo.
I am David Hood..
I think Hal gave you the best reply. If you don't know if your Mother died of familial ALS, and what form, testing is of little use. How is the weather in Tucson? My sources tell me lots of cold and rain, not what I want.
Thanks...
David Hood
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