scotslassie
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This is what I was talking about - 40+ posts on this thread all going round in circles.
Question about ALS
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momap53
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Insomnia, I'm so sorry to learn that your Mom's ALS diagnosis was confirmed.
Please try to take it one day at a time. Be proactive in getting whatever assistive devices she needs.
Let us know how we can help as you travel this journey with her.
Please try to take it one day at a time. Be proactive in getting whatever assistive devices she needs.
Let us know how we can help as you travel this journey with her.
notme
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I'm sorry your mom was confirmed. I thnk you can find support here, hon. You may need it in the coming days.
For now, try to not let the worry over the genetics overshadow you. Hugs and best wishes to you.
For now, try to not let the worry over the genetics overshadow you. Hugs and best wishes to you.
hjlindley
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I'm sorry for your mother's diagnosis but sometimes the devil you know is better than the devil you don't know. Were all here to help if we can. Don't be afraid to ask any questions, somebody here has seen something.
vzandt
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One of my sons was very worried about this being genetic. Every twitch and cramp ....magnified. I hate that he feels this way. The neurologists and the three nurses in the room all shook their heads and said"no..no..no"." Do not get tested. Do not worry...do not let this mess with you more then it already is." I know this is easier said then done. As time goes on hes feeling a little better. I hope you do to.
insomnia
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Thank you very much for your support. I try not to worry about genetics now and take care of mom. She is suprisingly calm. Says: I am not afraid of anything. She is stronger than me. And I am ashamed. I was always crazy about diseases. And this one is above my worst fears. I will ask you advises about care of mom, if you let me.. Now she is still ok if it's possible to say so...
Best wishes to you. And thank you really...
P.S. I am not the same person as Concerned girl (or smth like this), as somebody said.. But yes..we have smth in common, I am concerned too.
Best wishes to you. And thank you really...
P.S. I am not the same person as Concerned girl (or smth like this), as somebody said.. But yes..we have smth in common, I am concerned too.
hangingon1
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You are worried about nothing. Fear not. My sweet wife of 39 years died of ALS a month and a week ago. She and her family were so healthy. I always thought that I would go first. One of the first things we did was to research hereditary ALS. It is not possible for sporadic to be passed on. ALS is a mystery disease. So much money and brains trying to figure it out with not much results.You hang in with your mother. Read some other of my posts about my experience with the disease. If you are the caregiver, be prepared for a rocky road. Just love her and value the time you have left with her. My wife's room is now a lonely one. Her sweet spirit is gone from this horrible disease.
insomnia
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hangingon1,
I understand all.. Just we don't know full family history, so can't tell it's 100 percent sporadic. That's why I feel so...
When I read this forum, it seems so many people have ALS... Here in my country there are about 50 people with ALS. Small country, so small number.. Very small number of people are aware of this disease.. No big experience, no tests, not a big choice of care devices. No fear amongst people if they have ALS, as I noticed here in forum. They don't know it here.. So when it hits, it seems so alien disease. Still helpless in this 21 century. My friends mom just got diagnosed with brain tumor and they are preparing for surgery, treatments. I have never thought that I would envy her in this situation. She has hope.
Just thoughts.. Sill can't accept it... Remembering how it all was before this.. Hope time will help.
I understand all.. Just we don't know full family history, so can't tell it's 100 percent sporadic. That's why I feel so...
When I read this forum, it seems so many people have ALS... Here in my country there are about 50 people with ALS. Small country, so small number.. Very small number of people are aware of this disease.. No big experience, no tests, not a big choice of care devices. No fear amongst people if they have ALS, as I noticed here in forum. They don't know it here.. So when it hits, it seems so alien disease. Still helpless in this 21 century. My friends mom just got diagnosed with brain tumor and they are preparing for surgery, treatments. I have never thought that I would envy her in this situation. She has hope.
Just thoughts.. Sill can't accept it... Remembering how it all was before this.. Hope time will help.
vzandt
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I have to explain what's going to happen to everyone I tell.he has als. We drive two hours to see his doctor. His gp told him if he has questions call them because she doesn't know anything about it. (She has been researching now though).
We don't know his history either. I do understand how you feel. What you have to do though is just be there for your mom. Not worrying is hard..but you've got to much on your plate to add to it. We'll be here.
We don't know his history either. I do understand how you feel. What you have to do though is just be there for your mom. Not worrying is hard..but you've got to much on your plate to add to it. We'll be here.
insomnia
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Mom's father had 9 siblings. 6 lived long, didn't have ALS, neither their children. 4 including him died young from other causes. Their parents - grandparents of my mom died about 70 years old, no ALS. We know all mom's mothers family, there were no ALS. So these 4 people make my mind not in peace...
"Go away now"? When someone's mother is on the verge of being diagnosed? What is your problem?
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