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Living with ALS can be a frightening and frustrating ordeal. Trying to
find help in a small community may mean explaining the course of the
disease over and over to individuals, who often cannot help in any way.
Others find help in their communities by education, telling others about
ALS, and asking for help. Many ALS families find themselves isolated and
fatigued spending more and more time in their homes.
A
few suggestions follow.
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Call your closest ALS
Association and discuss the problems that you and your family are
having. Two heads may be better than one.
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Visit the national ALS
Association web site:
http://www.alsa.org
This will give you
a comprehensive look at symptom management information, research, what's
new, and materials you may not have known existed.
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Check with resources
in your area: hospitals, department of aging, transportation services,
veteran affairs, social service agencies, churches, health charities,
home care agencies. Many of these have social workers that may help you
network to find assistance.
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Ask friends and family
for help…they love you the most! Don't be afraid to ask! By delegating
one job a week to 5 friends/family--you can allow others to be involved
and get some needed help. Jobs might be: mowing the grass, fixing a
meal, staying with the ALS patient so the caregiver can get out, running
errands, etc. Think ahead-make a wish list, and let those who want to
help, choose from the list.
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Don't be afraid to
call your neurologist for help. They want to help, and they have many
resources to share with you, too.
- Call your
closest ALS Association . . . or did I say that already?
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