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there are many people that have this condition and it is a just as heart breaking as all the others. there are so many questions that i would have liked to know how to handle things, and what to expect. seems like no one really wanted to talk straight to us about it. had to learn so much on our own and found out things later that would have been more helpful if social workers would have told us sooner where to get help.

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You likely don't see much about ALS on this site, because ALS tends to strike younger people, and most readers come to Agingcare.com because of their loved one's aging conditions. We're delighted to have you on the site, however. You may also want to try the ALS Association at www.alsa.org.
Take care,
Carol
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I no of at least 8 people in our small rural area that were from the age 35 to 50 years old that had als and the youngest was 18 that lived in springfield, MO . The MDA has always been more helpful with our needs or on hand personal contacts as well. ALS can strike at any age or gender. I am in contact with ALS sites and the Association and they continue to explore a cure or cause . thanks for your response .
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I am 63 and I got ALS three months before my husband who had dementia died. After 10 years of caring for him now I need to be cared for. I think ALS should be discussed here if the person with ALS is over 60. I come here for answers not rejection.
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I can't think of a more heartbreaking situation than yours. To me, your developing ALS after years of caregiving points directly to the toll caregiving can take on the caregiver's immune system. Many caregivers face rheumatoid arthritis, MS or other immune diseases themselves. Sadly, you have been struck with one of the toughest diseases anyone can have. I hope that you have a good support system and also that we can lend support to you.

You gave so much of yourself as a caregiver and now you need care. It's got to be difficult to accept. I'm sure that you've contacted the ALS people and looked at their site at alsa.org.

I'm sorry if you felt a sense of rejection when you contacted the site since that isn't at all what I, or anyone else, meant. You wondered why ALS wasn't discussed more on the site and I wanted to explain that the site tends to lean where the readers take it. I failed to understand that what brought you to the site itself was that you’ve been a caregiver and that you are not a young person, either. You are now guiding us along with ALS.

Please check in with us often to let us know your caregiving story and your feelings about being a care receiver. We would love to hear updates on how you’re feeling in general, as well. You can help others with your story and we hope to help you in any way we can.

Take care,
Carol
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