Old 03-09-2006, 08:43 AM #1 (permalink)
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Hi, everyone. My name is Heather. I was diagnosed with ALS last Nov. this is familial as my mother had ALS 30 years ago and a a first cousin who passed away with ALS 5 years ago. I have had to stop working and I am the principle care-giver of my 18 year old daughter who is disabled. This is a recurring nightmare. I don't want to put my children through What my brother and I went through 30 years ago. I have all kinds of worries and fears for my kids but especially for my dependent daughter. I have a very supportive husband. Last night I took my first "walk" outside using a scooter I look forward to hearing from other PALS I think we are the only ones who can feel this devastation going on in our bodies and we need to keep in touch Heather
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Old 03-09-2006, 10:20 AM #2 (permalink)
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Oh Heather,

That's a brutal situation.

In many ways I think that ignorance is bliss when it comes to aspects of ALS. I really have no idea what my deterioration will be like. I've accepted that I will deteriorate, but really have no clear understanding of what it will be like - so I can easily delude myself into thinking the best and be in a state of quasi denial.

You - on the other hand - will have been on both sides - as a caregiver for your mom and now as a PALS yourself. So you know exactly whats in store for you...not to mention the added stress relating to any caregiving your daughter requires...OOF!

At least it sounds like you will have good support around you...and buck up...a lot has happened in ALS research since your mother's time.

I really think we are close to some kind of treatment.

I recently posted a thread about a study which involved mice subject to a familial form of ALS and the researchers were able to stop the progression of ALS using small interfering RNA. Here is the link:

ALS halted in mice study

There is huge promises with this research involving siRNA and it has tons of applications - not just for ALS. I'm sure we will hear more about it.

Sorry to hear about your predicament - but glad that you found us.

We're all in this together.

Richard

Last edited by David : 03-09-2006 at 04:13 PM
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Old 03-09-2006, 01:05 PM #3 (permalink)
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Welcome Heather xxxxx
Don't loose the hope!
Good you are here!

One day will! Why not today?
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Old 03-10-2006, 02:40 PM #4 (permalink)
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Hello Heather, Echoing the other PALS, Welcome.
Do you mind telling us where you live as the care availability is differant from country to country?
My prayers are with you. Try to find anything to be thankful for once a day esp. when the going gets tough.
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Old 03-10-2006, 04:01 PM #5 (permalink)
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Hi Heather,

Sorry for the reason you're here but glad you're here. I feel as Richard does, you are in a particularly tough situation, and yet you are fortunate to have a loving and supportive family. Let us know what we can do to help.
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Old 03-10-2006, 10:27 PM #6 (permalink)
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Hello Heather . As you can see we have a rather diverse group from a few different places here. One thing in common though is that we are all in the same leaky boat called life. Whether you bail for all you are worth or just sink is a personal decision. Most of us here are bailing as fast as we can. Some days we make headway and others we get the sinking feeling. Hopefully you will stick around with us and help to bail. Don't know why I'm feeling nautical today but I believe it was John Paul Jones that said "Don't give up the ship" Take care and welcome.
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Old 03-11-2006, 12:37 AM #7 (permalink)
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Hello Heather,
Like everyone else here on this site,, i am glad you found us. There are really no words to make things better for you. But it does help to vent somedays,, especially with people that have some idea what your going through. Unfortunately ,, you know more than most of us ,, what your up against with this disease. Stress is one of the worst enemies of this disease, so try not to get to worked up about the care for your daughter. We will pray for you and your family and leave the rest to our Lord. Things have away of working themselves out if we let the Lord lead the way.
Let us know if we can do anything for you. And feel free to vent, ask questions etc.

Trust in the Lord with all your heart and lean not unto your own understanding
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Old 03-14-2006, 06:37 AM #8 (permalink)
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Hi Heather, welcome to the forum, ditto to what everyone else has said.

Best wishes Jeannie
 
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