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beauty4everyone

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Salutations of the Day:)
*Having ALS seems unreal. I wake each morning reminding myself I have it. Checking to see what I can still do. Yesterday, my knees buckled and I collapsed. Luckily, I could hold myself off the floor until my family dragged me up into bed. Leg strength to raise myself from the floor no longer exists. I hope my arms hold out for a long time. :)
*Tomorrow is the Big Day: Telling Church Sunday school friends I have ALS. Each of us will tell our own class the same morning. No one can say some were favored over others. Their knowing confirms it’s real. Our family is strong together; telling others face-to-face is difficult. I hope I can say what’s needed without crying.
*It’s important to think how friends can help. If they ask, tell them. Some drift away because they are afraid of saying the wrong thing, or don’t know what to say or do. We have to educate them. Make them feel needed. Ask for hugs, cards, calls, a meal, a visit. If you don’t hear from them, call them. Tell them you miss seeing them. Plan to go out together while you can. Remind them, you are still you. That you HAVE a disorder, you are NOT the disorder!
*Reach out, take their hand, tell them how meaningful their friendship is. Do whatever is comfortable for you.
*Those who love you will stay. Others will not. It wounds our heart, but let it go. As my husband once told me, “Consider the source”. I too, have a heart wounded by friends. It has been difficult, but there’s a time to lay it down. There's still a world out there. I imagine caring people on these forums can become new friends. "Hope springs eternal".
*May you discover something today to lift your spirit. May blessings abound. B. 8)
 

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KimT

Extremely helpful member
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B,

Your faith and sense of humor is evident to all. I "lost" many friends and all my relatives (I don't have a husband or children) after my diagnosis. They are too busy, not really concerned, or too scared to be around me. I had my church family for a year. Then our pastor left, we got a new pastor, and the church split. There was a lot of tension and I've church hopped ever since.

Now I'm in a new condo with a housemate but I've made new friends. There's no way of knowing if they'll stick with me but, for now, they fill some of my days with happiness.

I hope you consider me a friend. If you ever want my e-mail address, just send me a message and I'll give it to you.
 

Bestfriends14

Very helpful member
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1,465
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AB
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Beautifully written, B. Good luck tomorrow and if you cry telling your church group, that makes you human and that's a beautiful thing.

Hugs to you.
 

KarenNWendyn

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People are always telling me to let them know if there is anything they can do to help. I tell them to spend time with me, that their presence is a gift.

People are always afraid to say the wrong thing. I tell them they can’t fix this, that there is really no wrong thing, but that they don’t have to say anything if they don’t want to.

ALS can be a very isolating disease, especially in its later stages. I don’t want to be isolated. I tell people that. But people have their own lives. I’ll keep trying to reach out. We’ll see what happens.
 

Hudson

Member
Joined
Jun 21, 2017
Messages
10
Reason
PALS
Diagnosis
02/2018
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US
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New York
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B,

Your post lifted my spirits.

As terrible as ALS is, I have found one silver lining. Various people I was once close to have heard the news and reached out to me. The expressions of love and support have been wonderful.

Hudson
 

beauty4everyone

Distinguished member
Joined
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Messages
264
Reason
PALS
Diagnosis
04/2018
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US
State
GA
City
Someplace
All your responses warmed my heart. Sharing your strength and willingness to move ahead in spite of circumstances gives others courage, too. Thank you so much for sharing. It means a lot to hear from you. More later. May blessings abound. B.
 
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