Talking with others living with ALS?

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JodyR000

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My husband was diagnosed recently. Outside of support groups such as this, did anyone get an opportunity to talk on phone, 1:1 with someone living with ALS and did it help?

Only people he has right now is medical staff , family etc all who can’t really relate at the same level.

I have emailed local chapters but anything else I can try to locate someone willing to talk?
 

Nikki J

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Are there support groups associated with either the clinic or your ALSa or other local patient support service? They might still be meeting virtually but I know people have made contacts that way. Another avenue might be PALS only facebook groups. That isn’t 1-1 but it isn’t unusual to find after a few posts someone who is willing to start messaging privately. I have made some good friends online and eventually was able to meet a few in person including some wonderful people here
 

JimInVA

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Our local ALS ORG had monthly in-person gatherings. At these events, there would be a topic of conversation and a speaker. Additionally, it gave folks an opportunity to meet others who lived locally to you. Obviously, during the pandemic, such meetings became virtual events. Definitely worth a call or email to your local ALSINFO.ORG folks to see what services they provide.

My best...

Jim
 

rnewton60

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I have Bulbar onset ALS since 11/01/19 and I would be happy to talk to your husband, but I can no longer speak! But would be happy to talk to him via email. I can be reached at <email removed; will send email to member>.
 
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KenM

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Our ALS Association chapter has a mentor program that matches up people with ALS to newly diagnosed. Check to see if yours does. If not, use forums like this to find people with similar situations with ALS and reach our to them. I found that some early phone discussions with people with ALS I was put in contact with helped a lot.
 

krnNdug

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I am sorry you are here, but stick with Nikki. She is right on and will help direct you or keep the crazies out.
I met some people from the Rocky Mountain Chapter who had a son-in-law with ALS who lived in Atlanta. Met them on a boat on Lake Powell. They were still volunteering with care services support groups 2+ years ago. Very nice folks.

Here is information for the Chapter and the Aurora support group.
“Please call us at (866) ALS-3211 or email [email protected] if you have any questions or would like more information.”
Theare still virtual. Our group in the Phoenix area will start person to person again in September. Our group is/was a lot of fun believe it or not.

Aurora (2nd Saturday of the month)
11:00 am - 12:30 pm ~ Care Coordinator: Megan Frisk

Peace with Christ Lutheran Church
3290 S. Tower Rd.
Aurora, CO 80013”

You might want to visit the ALS Registry and look at clinical trials. The first has a good amount of info and we are trying to streamline it with only pertinent information. Clinicaltrials(.)Gov can be very cumbersome. You might want to look for then via the NEALS or I AM ALS websites which are customizable and MUCH easier to read. Also, ALS Untangled is good to see many alternative “treatments” and how they perform under regular trial research and testing.

I know that Jim above won’t remember me, but he had great input years ago as well as now.
For me, I had to get involved and have served in many capacities. Every time I think it is time to rest, then I get back to helping out. I have a slower progression of ALS, but we are all in this and it sure helps a lot if we are together.
 

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affected

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@krnNdug I remember you!!!! so good to see you posting!
 

JimInVA

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Love, LOVE the poolside pictures! Thanks for sharing... and good to hear from you, again, @krnNdug ! :)

My best...

Jim
 

krnNdug

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I have a pretty slow version. Plus, I responded very well to the Tirasemtiv trial. I guess around 40 to 50 tolerated it and saw some benefit. I was told that I am the only one still taking it. My FVC & SVC went from 58 to 93 in 1 month. Lots of other good things for me. There were 3 others in our support group in the trial and the only one to go up to 1.5 years stopped because she wasn’t sleeping well. I am there now as well. I don’t want to stop, but it’s going to happen soon. 3 months ago my FVC/SVC were around 86. We will see in 2 weeks where I am with FVC/SVC.
 
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