- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
My sweetheart was always very private about his health issues before ALS. This has changed completely, and he is now VERY open about things such as potty problems...
He has been very quiet about the downside of ALS for the past two years on his FB page, but friends have asked for updates and he's putting it all out there. In a string of posts yesterday he described difficulties with tolieting, condom catheters, and diapers. He also commented that if anyone was offended they could stop following.
The response has been incredible. Many, many people have not only expressed their support, but thanked him for being so graphic because they had had NO idea what this disease puts people through and they appreciate the information.
We also had several requests to come visit AND advice from a nurse friend on those pesky peeing problems.
I'll keep you posted on how this progresses.
LOL...our kids have not commented AT ALL about these posts. I know they are horrified (it's ok for them to know, but they will think it is TMI out there in public).
We're headed to DC in May to advocate on Capital Hill for support for ALS. If he starts talking about poop and pee in those hallowed halls--no, wait, maybe that will be appropriate!!!!!!!!
Just another adventure ...
He has been very quiet about the downside of ALS for the past two years on his FB page, but friends have asked for updates and he's putting it all out there. In a string of posts yesterday he described difficulties with tolieting, condom catheters, and diapers. He also commented that if anyone was offended they could stop following.
The response has been incredible. Many, many people have not only expressed their support, but thanked him for being so graphic because they had had NO idea what this disease puts people through and they appreciate the information.
We also had several requests to come visit AND advice from a nurse friend on those pesky peeing problems.
I'll keep you posted on how this progresses.
LOL...our kids have not commented AT ALL about these posts. I know they are horrified (it's ok for them to know, but they will think it is TMI out there in public).
We're headed to DC in May to advocate on Capital Hill for support for ALS. If he starts talking about poop and pee in those hallowed halls--no, wait, maybe that will be appropriate!!!!!!!!
Just another adventure ...