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My sister has ALS
03-20-2011, 05:41 PM
Post: #1
My sister has ALS
Thank you very much for your reply about the length of exercises.

I have a question for you, this time on behalf of myself, rather than on that of my sister.

Western medicine does not offer any solution that leads to healing of ALS, but it provides a support system that helps one survive in relative comfort when what is believed to be “inevitable” physical deterioration sets in. There is a variety of help solutions - wheel chairs, oxygen inhalers, aids to feeding, communication-facilitating devices, support groups etc. The patient and his family are advised to start organizing these things early on in order to have them ready when they are needed (as they "inevitably" will be) and be accustomed to them and ready to use them.

If my sister were to follow this line of thinking, she would go against her belief in the possibility of recovery on which she needs to concentrate all her energy and time. She doesn’t have interest, time or energy for looking for the wheel chair or planning a support group. She uses her time and energy towards what she sees as a possible road to recovery.

The question that arises in my mind is this:

What would happen if her condition deteriorated and she actually needed a wheel chair? Would it not be wiser to look at the wheel chairs now, while she is still relatively well? Wouldn't it be better to be "prepared" for what happens to the great majority of ALS patients?

However, I am aware that it would be very conflicting, if not downright impossible, to travel both the Road of Recovery, (RoR) and the Road of Acceptance (of inevitability of physical deterioration) (RoA).

That is where I need your help:

There is a certain percentage of patients who do not respond to the therapy my sister is applying. At what point can she know that this is not her case?

At what point would one have a reason to think that it is time to switch from RoR to RoA?

How realistic is the expectation of recovery?

I would appreciate your helping me deal with the questions and doubts that rise in my mind.

Many thanks,


P.S. Would it be possible to seek recovery even if one is already in a wheel chair? Where is the line that says :too far gone - physical recovery impossible"? Is there such a line?
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