My mother Diagnosed today

[AngelaRenee]

My mother was just diagnosed with ALS or Lou gerigh's disease today. They suggested she get a secound opinion in lousville, KY. We live in the Cincinnati area. She first started having trouble with her hand and fingers 6 months ago, and had a few episodes where she was unable to speak properly. I have noticed she slurs her words silghtely more than she used to. My sister and father are having a very hard time right now believeing all of this. We have no genetic history of any relatives with ALS. I also read that my sister and I could have a 50/50 chance of getting it in the future. We are all very scared for my mom. She is only 51 years old and this is all so new to us.

 

[ottawa girl]

Dear Angela,

It's such a harsh diagnosis. I know. Shocking too. You'll be in a spiraling whirlwind for awhile. I am very sorry.
This forum will be very helpful to you and to your Mom (when she's ready). Lots of great people offering solid information. It's been a lifeline for me.

In the meantime- just do as you do - love your Mom and stick together. Be patient with yourself. Take a deep breath.

Don't be shy to ask questions.

 

[cervus]

Hi Angela. So sorry your mum was just diagnosed with ALS. The people on this forum are amazing. I would suggest your parents make contact with their local ALS Society. They, along with the ALS Clinic, will help guide your family through this illness. Don't be worried about you or your sister getting ALS. If its sporadic, chances are very,very slim. Love and be there for each other. Yasmin.

 

[brooksea]

Angela, I'm so sorry about your mother. Yasmin is correct in saying you need not worry if this is sporadic and no one in your family is passing this down genetically.

Register with the MDA, also. They have some informative information regarding daily living and research, as does the ALSA. Both have loaner closets for equipment.

I hope you will find this forum helpful in your journey.

 

[momap53]

So sorry for your mom's DX.
You'll find a wealth of info here to help guide you and a very caring and supportive group.
Please check our archives for older discussions on a variety of topics or just ask away, someone will have experience with just about anything your Mom is dealing with.

 

[WellsRuby]

Sorry about your mom...as the others have stated this is a wonderful forum to help you through it. You will find a wealth of information and support here.

 

[panguinjen]

Sorry to hear about your mom! Sounds like her speech is affected and there great products out there to help her...contact SSDI through social security...she'll get automatic approval under TERI conditions but will have to wait 5 months for a check....
One day, one moment at a time!

Jen

 

[marypat]

Angela so sorry for your mom's diagnosed. you will find answers and support here. You might consider OSU for a second opinion. They have a als clinic and a large research program and many resorces for als patients

 

[rocmg]

Angela, I totally empathise with you. I was in your position 3.5 years ago when my mum was diagnosed with ALS. we got a second opinion too, from an ALS specialist.

my mum is still with me, although her life is very much shrunk from what it used to be. she has many duvet days, but we are still able to go shopping when she is not feeling tired or fragile.

this is one hell of a journey, for you and your mum (and the rest of your family) ... you will find your strength and support on this forum.

 

[Miss]

Angela, my children were a bit worried about thier potential to inherit the disease, too. Rest assured, your chances are no greater than anyone else's. Most cases of ALS are sporadic. If you have no family history, there is a 99 percent chance that your mother's is sporadic.

As others have said, if your mother has worked, your mother needs to file SSDI as soon as possible. Also, be sure she registers with the CDC's ALS registry as well as the ALSA.

We are all here for you and your sister. Don't hesitate to ask us questions.