ALS hits for the second time in family.

[MaryKay]

I was 15 when my father passed away in 1984 with ALS. That was a difficult blow for my family. We struggled with his loss but some how we got through it. Twenty nine years later now my sister has been diagnosed with familia ALS. It's hard seeing the one person who has been so positive, healthy, caring, and religious get hit with the same disease. I know advancements have been made and the course she is going through is different, but it hurts so much knowing what my father went through and seeing my sister go through it. I pray a cure comes quickly for all who suffer from ALS!

 

[Nighthawk]

Hi,

I am very sorry about your sisters' diagnosis.
You've found an amazing place here for reliable information, lots of support and friendship.
I truly understand just how overwhelming these news are for you, but, hang in there, give your sister all the love you can, laugh with her and enjoy every day to the fullest.

Just remember this:

"Jehovah is my Shepherd.
I shall lack nothing.
In grassy pastures he makes me lie down;
By well-watered resting-places he conducts me.
My soul he refreshes.
He leads me in the tracks of righteousness for his name’s sake.
Even though I walk in the valley of deep shadow,
I fear nothing bad,
For you are with me;
Your rod and your staff are the things that comfort me.
You arrange before me a table in front of those showing hostility to me.
With oil you have greased my head;
My cup is well filled.
Surely goodness and loving-kindness themselves will pursue me all the days of my life;
And I will dwell in the house of Jehovah to the length of days."

And, don't forget, we are here to help in this journey.

Hugs.

NH

 

[ottawa girl]

MaryKay,

Such devastating news for your family. I would hope that management of our disease has improved significantly over the last 29 years. ( it's just the cure we are still waiting and praying for).

You will find comfort, support and great information here. I hope your sister can and will join us as well. It's been a life line and life enriching place for me.

 

[Nikki J]

Hi Mary Kay

I am so very sorry. I am from a FALS family too. My sister is the first of our generation to be affected. FALS brings a whole new dimension to an already devastating disease. There are definitely things available to your sister that were not there for your dad even though a cu re eludes us.

Do you know yet if there is an identifiable gene? Once the shock fades please consider participating in some FALS research. I think our answers will come from the work they are doing on the genetic piece of ALS.

Take care You and your sister will be in my prayers
Nikki

 

[judyroyalglenn]

Hey MaryKay,

First of all, welcome to the forum. There is a wealth of knowledge here to help ya'll as you walk down the road of ALS again.....great people too. Sorry for your father's death and sister's diagnosis. You can help your sister in so many ways be helping her prepare more than when you father had ALS. You are right about the advancements; being prepared and knowledge are great assets. Lifting ya'll in prayer today and knowing her faith will help the road so much better with Him at her side! Everyone is here for you ~ Judy

 

[Punkie65]

God be with your sister and your family through what had to be a terrible shock. A family should never have to live through this disease once, and to have it hit a family twice is unimaginable. My husband, Frank, has had ALS (6 years) and before that he had been diagnosed with Lukemia (all in the same year), but after 4 chemos was in remission. Frank's father has been diagnosed with Supranuclear Palsey with almost the same results as my husband's ALS has shown. My son, (16), is terrified that he will end up with one of these horrible diseases - and how can I make a promise that he won't be hit with any of them? I hope your sister has a long and happy life still ahead of her - love and hope can go a long way (and lots of praying, too).

 

[akhopkins]

I am so very, very sorry. This is a cruel blow to your family. You are certainly in my thoughts and prayers. May God bless you all

 

[pdcraig]

I'm a caregiver for a FALS so your post really speaks to me. I'm so sorry for your sister's diagnosis but you're in the right spot for support and information. It has made a world of difference for me.

 

[cervus]

Hi Mary Kay. I'm so sorry about your sister's diagnosis, your father's passing and all that you and your family are going through. Like others have said, stay informed and several steps ahead of this awful disease. I hope your sister is under the care of a good ALS Clinic as well as in touch with her local ALS Society, for guidance and equipment. Again, so sorry. Yasmin.