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Old 12-06-2003, 08:46 AM #4 (permalink)
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Join Date: 2003
Posts: 28
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New Member
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Join Date: 2003
Posts: 28
JOY is an unknown quantity at this point
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Hello Diane

Thanks for the posting with all that is involved with this disease it is not surprising to me to learn something more can be taken away. How cruel,
I hope you and your sister stand together as you face your dad's illness.
It is good to have the support of someone to go through this to cry with to share in all that als will bring to your life. I have never seen such a robber of souls as this disease. My son has cystic fibrosis, my daughter is a juvenile diabetic and my dad passed from throat cancer, all of the above are hard but none could have prepared me for what we faced with als.

Not a day goes by now after the care has been taken over for us by a higher power that I do not mourn for what was taken away slowly daily from my brother. I truly believe there is no other disease on this planet that could render a family and its victims so helpless.

That being said there are many here who can help to identify what you and your family are facing. Carol, Henry's wife has been a wonderful source of support for me and reading the posts here can help in a small way to know that there are others who are dealing with the effects of this horrible disease.

The bulbar type onset does seem to be the quicker progressor more than the limb onset. Although they both seem to come to the same place one just quicker than the other. This disease can burn out caregivers quickly so it is important to welcome all the help you can get and any offer of assistance should be taken seriously. You and your sister can offer your dad all the comfort you can but need to be able to keep your strength and emotional comforts in balance. I cannot stress this fact enough take time for what is important and let the little things go.

I hope to hear how you and your family are and I will keep you all in my prayers and thoughts. Joy
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