Caring for 24yo son, anyone else?

[GailV]

I feel for all of you and the struggles we all face caring for our loved ones. Can I ask if anyone out thereally is caring for a child with ALS? My son is 24 and was diagnosed in October 2014 at the age of 22.

 

[scaredwifetx]

Welcome Gail. I am so sorry that you find yourself here and that your son has this disease. He is so young. Know we are all here if you need anything.

 

[Atsugi]

Gail, how is your son's breathing and speaking?

I think your son is the youngest PALS ever on this website.

 

[lgelb]

There are a couple of others. Hopefully, they will chime in. Sorry that you find yourself in this position. You might also look into your ALSA/MDA chapters' virtual support groups and on Facebook where you may find others, if you haven't already.

Best,
Laurie

 

[GailV]

Gail, how is your son's breathing and speaking?

I think your son is the youngest PALS ever on this website.

His breathing is ok. He had a sleep study done and we have to set up an appointment to have them bring the CPAP. He is not very happy about this. He says his breathing is fine. And his speaking is getting worse....hard to understand him at times.

 

[GailV]

We have asked at his appointments at Mass General but he is the youngest. I have been in touch with both the ALS and MDA chapters. They have been very helpful. I haven't put it out on FB though. It is very hard to have him agree to much.

 

[GailV]

Thank you. I appreciate it.

 

[GregK]

have to set up an appointment to have them bring the CPAP..

CPAP is not appropriate for ALS.

BiPap is the correct device. Similar but NOT same.

 

[affected]

Hopefully that was a typo saying CPap as Greg said BPap is the appropriate equipment, CPap can be outright dangerous.

 

[lgelb]

Hopefully MGH knows the difference, but Greg/Tillie are right -- never hurts to double-check.

Also, your son might be interested in the Young Faces of ALS group.

 

[twitchykitty]

Hi Gail, I was diagnosed just after I turned 29 and my mum has been caring for me for 3 and a half years. I showed her your post and she said she is more than happy to talk to you if you're interested. if you are let me know and I can help her register .

She reads my posts anyway and we have no secrets so I don't mind I know I can be a pain in the butt

Lastly sorry for your sons diagnosis