Old 08-11-2018, 11:05 AM #1 (permalink)
beauty4everyone's Avatar
New Member
 
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 55
beauty4everyone has a spectacular aura aboutbeauty4everyone has a spectacular aura about
beauty4everyone beauty4everyone is offline
New Member
beauty4everyone's Avatar
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 55
beauty4everyone has a spectacular aura aboutbeauty4everyone has a spectacular aura about
Default Helping Others Help Us

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 itís real. Our family is strong together; telling others face-to-face is difficult. I hope I can say whatís needed without crying.
*Itís 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 donít 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 donít 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, ďConsider the sourceĒ. I too, have a heart wounded by friends. It has been difficult, but thereís 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.
Attached Thumbnails
Helping Others Help Us-minion-moment-18.jpg  
beauty4everyone is offline   Reply With QuoteReply With Quote
The Following 11 Users Say Thank You to beauty4everyone For This Useful Post:
Bestfriendstilltheend (08-11-2018), Erika (08-11-2018), Jane (08-11-2018), Jrzygrl (08-11-2018), KarenNWendyn (08-11-2018), KateEmerson (08-11-2018), KimT (08-11-2018), MarieLaure (08-12-2018), Narrowminded (08-11-2018), pittsburghgal (08-12-2018), sassy (08-11-2018)
Old 08-11-2018, 04:41 PM #2 (permalink)
KimT's Avatar
Extremely Helpful Member
 
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,790
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
KimT KimT is offline
Extremely Helpful Member

KimT's Avatar
Join Date: 2014
City: The Beach
State: South
Country: US
Diagnosed: 08/2015
Interest: I have been diagnosed with ALS.
Posts: 2,790
KimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond reputeKimT has a reputation beyond repute
Default Re: Helping Others Help Us

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.
KimT is offline   Reply With QuoteReply With Quote
Old 08-11-2018, 04:54 PM #3 (permalink)
Bestfriendstilltheend's Avatar
Member
 
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 315
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Bestfriendstilltheend Bestfriendstilltheend is offline
Member

Bestfriendstilltheend's Avatar
Join Date: 2017
City: Calgary
State: Alberta (AB)
Country: CA
Diagnosed: 05/2017
Interest: I am a caregiver for someone with ALS/MND.
Posts: 315
Bestfriendstilltheend has a spectacular aura aboutBestfriendstilltheend has a spectacular aura about
Default Re: Helping Others Help Us

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.
Bestfriendstilltheend is offline   Reply With QuoteReply With Quote
Old 08-11-2018, 04:55 PM #4 (permalink)
KarenNWendyn's Avatar
Senior Member
 
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
KarenNWendyn KarenNWendyn is offline
Senior Member

KarenNWendyn's Avatar
Join Date: 2017
City: Southern Oregon
State: Oregon
Country: US
Diagnosed: 07/2017
Interest: I have been diagnosed with ALS.
Posts: 931
KarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant futureKarenNWendyn has a brilliant future
Default Re: Helping Others Help Us

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 canít fix this, that there is really no wrong thing, but that they donít have to say anything if they donít want to.

ALS can be a very isolating disease, especially in its later stages. I donít want to be isolated. I tell people that. But people have their own lives. Iíll keep trying to reach out. Weíll see what happens.
KarenNWendyn is offline   Reply With QuoteReply With Quote
Old 08-11-2018, 05:43 PM #5 (permalink)
Hudson's Avatar
New Member (Say Hi)
 
Join Date: 2017
City: New York City
State: New York
Country: US
Diagnosed: 02/2018
Interest: I have been diagnosed with ALS.
Posts: 9
Hudson is on a distinguished road
Hudson Hudson is offline
New Member (Say Hi)
Hudson's Avatar
Join Date: 2017
City: New York City
State: New York
Country: US
Diagnosed: 02/2018
Interest: I have been diagnosed with ALS.
Posts: 9
Hudson is on a distinguished road
Default Re: Helping Others Help Us

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
Hudson is offline   Reply With QuoteReply With Quote
Old 08-11-2018, 07:49 PM #6 (permalink)
beauty4everyone's Avatar
New Member
 
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 55
beauty4everyone has a spectacular aura aboutbeauty4everyone has a spectacular aura about
beauty4everyone beauty4everyone is offline
New Member
beauty4everyone's Avatar
Join Date: 2018
City: Someplace
State: Ville
Country: US
Diagnosed: 04/2018
Interest: I have been diagnosed with ALS.
Posts: 55
beauty4everyone has a spectacular aura aboutbeauty4everyone has a spectacular aura about
Default Re: Helping Others Help Us

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.
beauty4everyone is offline   Reply With QuoteReply With Quote
Reply

Tags
als, bed, crying, family, heart, hope, lift, love, wrong


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Helping Cpeters Cpeters Do I Have ALS? Is This ALS? 16 10-25-2015 05:57 PM
Helping Yourself Heal brooksea Past Caregivers (CALS) 5 05-31-2012 08:42 AM
helping research CRF8 ALS Research News 2 02-17-2009 06:23 PM
Any ideas on helping Mom? bellard General Discussion About ALS/MND 11 05-16-2007 11:48 PM
helping hands Poco General Discussion About ALS/MND 13 04-25-2007 09:26 PM


All times are GMT -5. The time now is 03:24 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016