Re: New? Introduce Yourself - Say Hello

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kds4

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Re: New? Introduce Yourself - Say Hello

Hello-
I am a newly diagnosed ALS patient, struggling to figure out the best way to tell my family. I am 37 years old with familial ALS. My mother lost her battle with ALS almost 20 years ago at the age of 48, her father lost his battle at the age of 38. I am the youngest of four "girls." My sisters and my father need to know about my diagnosis, but it breaks my heart that I'm going to put them through this torture again. Thankfully, my husband and I decided not to have children, due to the possibility of passing on this gene. If anyone out there has any advice for me, I would really appreciate it.
 

abbas child

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Re: New? Introduce Yourself - Say Hello

Hello kds4,

I am so very sorry I didn't see this before now. We really try to welcome and get to know all who come in as new patients (PALS) or as caregivers (CALS). I hope you'll forgive the oversight, and return.

For advice in telling your Dad and your three sisters, honestly... I would just bite the bullet, get them together if at all possible and have one emotional conversation. Would they already see that you're having a problem? If so, I expect the fear is already there, since this is familial. It is heartbreaking for you, your husband and all of your family.

Do you need help in getting around the forum? In the blue strip above is the FAQ button which answers a lot. Of course, there's also a search button in that bar. Click onto anything in blue lettering and underlined to go there.

My prayers are with you as you decide how and when to talk to your family. I hope we can help with support and answering questions you might have.

Ann
 

Christina39

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Re: New? Introduce Yourself - Say Hello

Hello kds4- I am so sorry to read your post. I will be praying for you. I love what Ann wrote...maybe easier on you to tell the family all together? I know it can be so emotionally draining. There are so many wonderful supportive people here. You are not alone. I am so glad you found the forum. Praying for you, Christina
 

peter57

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Re: New? Introduce Yourself - Say Hello

welcome kids4,

Ann's posting has great info.

There are many people on the forum to "bounce "questions off of, from all over the world, even some from " down under" :lol:

Cheers

Peter
 

LornaDoone

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Re: New? Introduce Yourself - Say Hello

Oh boy..I am feeling for you. We are an ALS family as well. I had no idea when I married that ALS was in my husband's family. He didn't know either. Now we have 2 kids and well, who knows.. Not sure what I would of done had I known.

Anyways, my husband comes from a large family and there are 7 living members with the disease. UGGH! I am feeling for what you're going through. Since I became part of the family, about 10 years ago, there have been 4 new diagnoses. All of our pals that have passed lived for greater than 7 years with the disease. Praise God!

New cases of the disease are usually announced via email in our family. HAHA. Lame I know. But that's how we do it. Immediate family is told in person and extended family all gets "the" email. Sucks.

How many cases of ALS in your family, to your knowledge? I am told that numbers can often be higher when you get far back enough because the disease was often misdiagnosed as MS or something like that. *shrug*

Did you guys go through the genetic testing? Some of our family has and some has not. My husband will not. Results have been kept private and not shared with the family as a whole. Although I'm sure select few do know the results.

Anyways, glad you found this group. Great group of folks!
 

kds4

New member
Joined
Mar 6, 2011
Messages
7
Reason
PALS
Diagnosis
02/2011
Country
US
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PA
City
Ottsville
Re: New? Introduce Yourself - Say Hello

Thank you everyone for your advice. I'm still learning about the blogs/forums, so bear with me. I was 16 years old when my mom was diagnosed with ALS. To say it was devastating to my whole family would be an understatement, a feeling I know all of you understand. I learned that ALS was genetic in my family in my early 20's, in many ways I've often felt that I would get ALS too. Maybe everyone who runs the genetic risk of ALS feels that way? My mother did not have the FALS that you can be tested for, so my sisters and I did not get genetic testing. Honestly, I don't know that would have wanted to know. I do not have any very obvious deficits at this time- for now it's mainly weakness, fasciculations, cramping, tight muscles, etc- I don't think that anyone is suspicious. I have been working my normal schedule (a nurse, on my feet all day) without anyone questioning anything beyond why I don't wear my cool clogs anymore. Herein lies my problem- if I call my dad & sisters together to talk, I won't need to say anything more, they will know before the words leave my mouth. My husband & I have decided to tell my father this weekend. I was able to gather my sisters, without the nieces/nephews, in a couple of weeks for a "birthday celebration" for my husband & myself. I feel bad lying to them, and even delaying in telling them, but I can't think of any other way to handle this. Thanks again for letting me bounce ideas off all of you and for the support. Please keep my family in your thoughts.--- Karen
 

abbas child

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Re: New? Introduce Yourself - Say Hello

Karen, dear heart. You are all in my thoughts. And as I think the "telling them all at once" was my advice, it also occurred to me that due to logistics it may not be feasible--or even best for you.

Actually, I told my father after sitting on it for four months. I wanted to see my own hometown Neuro who cared about me and get his insight (and he had to tell me the realistic picture--which shocked me but at the same time, I appreciated) before giving it up entirely and making Dad aware. He'd been totally clueless, as were my husband and I the moment before getting the EMG. Dad told my brothers. Don't worry about not being open. You are doing a tough thing and they surely will realize that.

Very best wishes, loads of sympathy and prayers,
Ann
 
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