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Lorraine171

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Jan 6, 2010
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Loved one DX
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MA
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shirley
Hi everyone! This website has been a blessing for me. It has also been very difficult. I lost my mom almost 2 years ago to familial ALS. Her mother, her aunt, her grand mother and her great aunt also died from this devestating disease. I was one of my mother care givers, helping her to spend her last 6 months at home and not at a nursing home.That was her wish. That time was the most dificult and painful time of my life, but I also cherish every second I spent with her.

The first night I came across this website I had a very specific question in mind, but then after seeing just one post I've been lost in pages and pages of everyones words. Everyone here is blowing my mind by being so strong and loving and caring. I wish I had found this website 2 years ago. I have spent hours reading blogs, and crying non-stop. But it's been healing at the same time. Painful but healing. I hear what everyone is going through, and it brings me back to the horror that this disease is. I wish I could take it all away for everyone.

Since this gene is very dominant in my family I have felt compelled to be tested for the gene before seriously considering having children. I feel like i am obligated to do so, not wanting to put my children through losing their mother and possibly passing on the gene. I have a 50% chance of having the gene. Recently I have found out that if you have a positive test result for the SOD1 gene (which my mother did have) than health insurance can become very expensive and there are laws that protect insurance companies so they basically have the right to discriminate against you.

My mom begged me not to get tested, saying that you shouldn't live your life in fear. And she wanted to be a grandmother, so dammit, she wanted me to have babies no matter what. I have had a peace within myself that tells me I can handle the results. Part of me thinks that the reason for this is the 50% chance I don't have it, and then I see my own children and life! But I know that if do have it, i will be devestated but I still need to know, so that I have the chance to be a mom.

So my question to everyone is...IS there a way to be tested for the gene anonymously? A way to do it through a hospital or a study that would allow no one but the facilitators of the study to know the results? Any input would be greatly apprechiated! Thank you for listening.
God bless everyone.
 
Lorraine,
What a thought provoking and insightful post. My you seem like such a lovely lady. I a so sorry you are having to deal with this at all. I a in the maybe familial road myself. I am probably the daughter of a mom who indeed passed away from ALS, She was never tested for it, everyone just assumed it was her diabetes and heart. I now know that is probably not the cause. I think I have what she had, which we all know is ALS, maybe a variant.. but none the less, it is what it is. I am going through a tough time, with another family member who is sick, we are scared, scared, scared, scared, does that even get close to how worried I am about this person. I hate this darn disease so much. I wish I could give you guidance on the gene issue. I am so torn, and believe a cure will be in the not so distant future. I think at least something to slow this crap down. I would respect any choice you make. I was not aware of my situation when I had my child, but he is the dearest love of my life and my heart. He is my reason for breathing, and my life would have not been complete without him in it.
 
Hi Lorraine,

You ask a really interesting question regarding the anonymity of genetic testing-I look forward to hearing what our more seasoned members have to say.

As you have seen by the posts you've read and commented on...this is an amazing group! I've learned so much from everyone here about how to LIVE with this disease-with courage, humor and love.

In the short time I've been part of this community, I have been blessed with encouraging, loving support as well as challenged with some tough questions - with the goal of helping me find my truth. We get amazing encouragement, love and compassion; wonderful laughs and sometimes sick humor:rolleyes: all with the determination to LIVE. We also get a swift kick in the b*tt when needed and some tough questions to ponder...all in love.
SO...having set the stage, I hope:roll: I have some thoughts for you regarding the genetic testing

* Do YOU want children?! I have a couple of very dear friends who made a conscious choice to NOT have children, which I believe takes great courage. At the same time, I can't imagine my life without my children...I guess the point is-what do YOU want from your life that will create the most joy?

* If you KNEW you had the SOD1 gene...does it tell you with CERTAINTY WHEN the disease will begin to show symptoms? What if you weren't to begin having symptoms until your later years- does that still mean no children? There are no gaurantees in life. Just to be obnoxious about my point...you could test negative for the SOD1 gene, have children and then have your life cut tragically short by an awful accident or other disease...should you not have children because of those reasons?

I hope I haven't insulted or offended you in any way and that I wasn't too much like a bull in a china-shop...My intention is to help you do a bit of soul searching to come to the decision that best serves your spirit and your life journey.

Peace,
Melody
 
OH! Thank you for your reply! I apprechite it so much! and really...you seem like the lovely lady! Honest. This is what I am talking about...This website. I don't meet people like you...kind and understanding. Hardly ever. What a breath of fresh air and yet, how sad I am for your circumstances. I couldn't imagine being in your shoes. You will be in my thoughts and prayers. There are no words to describe how you must be feeling and yet, here you are showing me kindness and lending a listening ear. It's really not fair. I am reminded of my mom's situation and how horrible I felt for her. How I would have taken her place if I could!

My mom watched her mother and her aunt pass away in the devestating manor in which ALS gets you...so when she got it, she gave up. She knew exactly what was going to happen to her, only it happened faster for her because it started in her fingers and spread quickly to her lungs. The progression of the disease was so fast, that she really shut down. She prayed all the time for God to take her. That was so hard because I wanted her to fight for me and for my Dad and the rest of my 6 siblings. I wanted her to want to live longer, just so we could have her for as long as possible. She refused a trache and a feeding tube. Something inside her just shut down and it was almost like she was gone way before she died. It broke my heart trying to instill a passion in my mom to want to live, but who could blame her?!?!?!

Knowing this, watching my mother and acknowledging the impact it had on my family and I, getting tested seems like the right thing to do. Atleast I know this about my family. I'm sorry for you, that you would have to face this without your mother and a history that can give you more insight into your life. BUT i am so happy for you that your son is a light in your life! That's what i want. I am a preschool teacher right now, and amazingly enough, I still want kids! hahaha. You would think that working with 18 three and four year olds would be a good form of birth control! hahahah...but I still want them. It's that connection and love that only a mother and child can feel. so special! Thank you so much for writing me :) take care and ttys
 
A few more thoughts...

As the wife of someone with MND/ALS, I am having to find the courage/grace to love my husband through this journey and be the rock for our children. Each person who has this disease, has to live through it in the way that THEY need. I am daily, learning how to love my husband in the way HE needs, not necessarily how I WANT him to NEED...does that make sense? My husband also says he will not get a trach or peg, which breaks my heart, because I know it means his journey here may be cut shorter. But...my job is to love him through it and help him find his peace-just like you did for your mom. It is heartbreaking and at the same time a gift and blessing. As much as it broke your heart to lose her so quickly, you understood-and loved her through it. Do you think your mom regretted having had children once she realized this gene could be passed on? I'm betting she was incredibly honored to be your mom and thought herself very blessed.

Melody
 
HI melody!
thank you for your response! And I like the aggresive questions! Really.. it's great!
I guess it's true. You really don't know what tomorrow will bring, or even what 5 minutes will bring. I do want kids. I reallllllly do. My fiance wants kids too..but he is actually divorced and has had a vasectamy! AHHHH...He would hate that i said that online..hahah..and You are probably saying TMI...TOO MUCH INFO LADY! I'm sorry! i hope you're not freaked out hahaha. But The whole point about all of that..is that...children will have to be planned in our future. And I am absolutely looking forward to adopting kids too! I am the youngest of 7 kids...I love big crazy families..and mine is HUGE and CRAZY and wildly Italian. I would love to replicate that!
But as much as I want to adopt I do want one of mine own as well. my mom always spoke aabout the beauty of childbirth..and it was a life changing experience (she went through 7 labors! poor thing!) and I want that experience just once. But because of his "thing" I believe that I should get tested! Thanks again for replying. God Bless you! You are in my thoughts and prayers!
 
LOL...there's very little on this forum that is TMI...we have a whole thread dedicated to analyzing BMs...:shock::lol:

I would go back to my original challenge...there are no gaurantees. I am blessed with twin girls and a little boy. My first pregnancy was a very challenging, difficult pregnancy that ended with an emergency c-section. When I got pregnant with my son, I was so excited! I was going to have a 'natural labor and delivery'. I made a birthing plan, did special classes and was DETERMINED to have the whole labor/delivery experience...AND...you guessed it- emergency C-Section with my son..:cry: I honestly felt like I'd missed some rite of passage as a woman. I've eventually got over myself and it...

your children, whether they are your biological gifts or adopted gifts are still gifts from God...
Peace,
Melody
 
I am so torn with this choice, so torn indeed. I think that whatever you decide will be your correct choice. I can see from the heart you are portraying in your posts that you will make a great decision whatever decision you make. I am so sure that your loving heart has made a difference in so many lives already, and either way this will continue. I am constantly and forever amazed by the Grace, dignity, and kindness shown on this board through PAlS and CALS alike. The one thing I am totally sure of, is that this disease affects those who are the amazing people in the World..
 
Hello again Lorraine171, I understand your dilemma as I am afraid of the whole familial gene too. I have just learned from another thread that you can test negative for the SOD1 gene and still get the familial type of ALS. My father was going to get tested since he has it, and his cousin also died from it, but now wont be wasting his money. I already told him that I wouldnt want to know anyway, because what am I going to do with that information? Live my life with this looming doom ahead of me? I just cant live like that. That said, the first thing I thought of was "I am so glad I had my daughter before I knew about this disease" ....well....think about that statement..."I am glad I had my daughter" is where that statement should end, because really, truly, I am thankful for her and I am glad that I didnt make a mistake by being tested and maybe not having her. Does that make sense? Oh yea, um....well..most vasectomy's can be reversed these days...just a thought anyway. (hehe) You sound like you are going to be a wonderful wonderful mom! Go for what you want in life...life is worth living the way you want it to be right?! Who knows if you and I do end up with it, maybe by then they will have a cure anyway right?! I think you already know what you wanna do, so just jump in and do it!
Hugs,
Kari
 
I found some information about insurance discrimination on the basis of genetic test results:

genome.gov | Genetic Discrimination Fact Sheet

The Genetic Information Nondiscrimination Act or GINA went into effect in 2009. The good news is that it prevents discrimination by health insurance and employers on the basis of genetic information. The bad news is that it does not cover life insurance, disability insurance or long-term care insurance. Those are allowed to discriminate. So I think you have a valid concern about keeping your test results confidential, if you decide to do it.

I believe testing can be done anonymously, but you will have to pay for the test yourself. You basically would give a fake name and social security number, and pay cash. I found some discussion on Huntington's Disease forums, where the same issue arises but it is more common because everyone has a potential genetic test (unlike with ALS where only about 2% have a potential test, as you do). However I am not sure of the details as to how you would actually go about doing it, nor do I know how expensive it is. Maybe your doctor could refer you to someone who could help.

If I were in your shoes, I'd have the test done anonymously if at all possible, and if positive I'd load up with insurance. Now that I've got ALS I find that some of my insurance is pretty good and some is pretty bad. It's just luck since I never expected this. If I had known, I would have planned it better. So you would have that advantage.

As far as kids, or potential kids, I am an optimist. I believe that in 20, 30, 40 years, by the time they'd be old enough to be at risk, science will have cures for this. It's got to happen.
 
I am wondering if the question here is not a little selfish? It should not be whether you would be around for the child but rather would you want to pass this gene onto your child and maybe have it suffer having ALS? Being a parent is about protecting the child. Not having a child to fulfill you!
 
Yes, Keeker I can see what you are saying. However..life is life and it is a wonderful thing to be living it...right?!
Hugs,
Kari
 
Hello.

My partner is adopted and at the time of his diagnosis we could not answer any questions about history of MND in his biological family. We decided to try for a child, as it was something we both wanted for a long time. We declined genetic testing. For us, the life is full of the unexpected, and we just wanted to live it. There are no guarantees. I never once thought it was a selfish decision. Our son is due to be born any day now. We subsequently found (after my pregnancy was trully underway) that there was no history of MND in either of biological parents' families of my partner. We have still not done any tests.

Perhaps, if there were several generations of his family affected by MND we would have felt differently and made a different choice. I did think about this for quite a while, and then thought that even if our child had 50% chance of developing MND in 40 or 50 years time, by that time there is surely to be treatment or a cure in place.

All the best, Dani
 
Babies are always a gift from God!
 
I wish there was a perfect answer... I truly think it depends on the two involved. If both have no doubt that you want this child and with every pregnancy there is always a chance of something going wrong. I think if it were me and i didn't know for sure that my child would have this disease i would want to have a baby... Just one opinion.... L
 
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