Old 11-03-2016, 07:25 PM #1 (permalink)
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I lost my Dad in 1989 to ALS. To date there have been 22 or more in our family to battle this disease. Recently I've had a cousin diagnosed. It's been 28 years and now it's back. I was 17 when I lost my Dad. My cousins dad passed 6 weeks after my Dad. So many emotions, so many memories that I hoped I'd never have to repeat. It's tough.
Decisions on genetic testing keeps going through my mind. Do I want to really know? What about my daughter? She's 18. I've always been open about the disease. There's so much research and new avenues.

I think I started blogging and this thread for support. I dreamed of my Dad. I told him I didn't know if I could do this again. He told me I had to fight for us. Maybe I'm crazy but I truly believe he was with me. So here I am, figuring out how to fight, how to support my cousin and her husband and young child. Praying daily for a cure.
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Old 11-03-2016, 07:36 PM #2 (permalink)
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Your daughter may want to know...
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Old 11-03-2016, 07:40 PM #3 (permalink)
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Hi Christy
I gather you are related to Mrs Crumb?

FALS is tough. Deciding about genetic testing is tough too. Have a read through the sticky for this section for my perspective on it.

I felt empowered when I tested as I had a way to fight. I started doing genetic studies as soon as I knew I was gene positive. I think my DNA has traveled more in the last few years than I ever have ( the researcher share samples). My last study visit the study doctor said getting samples from gene positive people is the only way we will solve this ( gene). I am sure that goes for every genetic defect

I am sorry you are facing this again. My family has had 2 years out of the last 33 without at least one person affected. It is a constant war. I do believe answers are coming but I hope the gene has passed you by and your twig of the family tree is unaffected
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Old 11-03-2016, 08:03 PM #4 (permalink)
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I can't express how sorry I am to see you here.

My husband was SALS and that was such a nightmare, I cannot possibly imagine how you all deal with FALS.

We will support you however we can.
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Old 11-03-2016, 08:09 PM #5 (permalink)
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Yes I am. He's married to my cousin. I went to visit today. We laughed, we cried and we made memories.
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Old 11-03-2016, 11:56 PM #6 (permalink)
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Default Re: Hi

Hi, Christy, and welcome. So sorry that your family has had so many losses. If I am gathering correctly that your daughter is aware, she will have her own testing decision to make, independent of yours but likely influenced by it as well as all she has and will see. Just something to keep in mind.

Best,
Laurie
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Old 11-04-2016, 07:23 PM #7 (permalink)
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Originally Posted by lgelb View Post
Hi, Christy, and welcome. So sorry that your family has had so many losses. If I am gathering correctly that your daughter is aware, she will have her own testing decision to make, independent of yours but likely influenced by it as well as all she has and will see. Just something to keep in mind.

Best,
Laurie
She is aware. I've talked with her about the disease and told her stories of her grandfather. She's named for him. She's never seen the disease first hand. This will be tough. I've tried to prepare her of how things will change for my cousin, physically and emotionally. My kiddo is 18, we ( my husband and daughter) are discussing blood tests and the skin punch for research.
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Old 11-04-2016, 07:38 PM #8 (permalink)
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Sometimes studies have an option for participating but not learning your genetic status. The U Miami study has an arm that allows that. One of my cousins is doing a study and not finding out in England.

If your daughter wants to pursue testing any time soon she should find a study where the results are not considered to be part of her medical record and do not have to be disclosed to life, disability and long term care insurances when applying. The current laws do not protect you for those things. You should consider these things as well if you have not done so.
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Old 11-04-2016, 10:48 PM #9 (permalink)
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Default Re: Hi

I am so very sorry that you have had to lose so many family members. Such a tough decision for genetic testing. In one way I wouldnt want to know but knowing I could pass it down would be tough.

I tend to think that knowing would cause you to miss out on so many wonderful parts of life because of fear. I hate even having to think about looking into the future.

My heart breaks for you and your family. Prayers and hugs!
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Old 11-06-2016, 08:59 AM #10 (permalink)
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It sad but amazing to know and have support from so many. Sad because we all have been touched by or facing this disease. Amazing because we aren't in this fight alone. I'm here for anyone that needs a friend
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