cris
Distinguished member
- Joined
- Apr 7, 2008
- Messages
- 214
- Diagnosis
- 12/2006
- Country
- US
- State
- illinois
- City
- Tiskilwa
Hi, I've been here awhile. I haven't posted much. All of your posts have answered most of my questions. They have given my husband(pals) and I alot of perspective. Earl was diagnosed in Dec06, he had limb onset. He seems to have progressed slowly,compared to others(much too quickly for us). He is now in a wheelchair all the time. He can't lift much of anything . His release is getting on the interactive games online. His typing ability is going quickly. Not sure what we will do when he can't type anymore. Recently he has been having problems in the bathroom. He can't get on and off the stool very well. He is 6'1" and I am only 5'2", so the lifting is getting to be an issue. I'm lost as to where to go for help. He doesn't want to hire help yet. I work a third shift job in a warehouse on a forklift, so the lifting isn't really the issue,only the height difference.
I like to think that we have adjusted to this fairly well, but sometimes I feel like I just want to curl up in a corner with a blanket over my head and bawl for a month. We have three kids(11, 9, and 7). Our 9yr old girl has cp and the 7 yr old has ADHD. They were to young to really understand when all of this started, but are now starting to get a gist and acting out. The 11 yr old has been seeing a therapist for about a year, because we had some major lashing out issues. (He has ADD) I know that God never gives you more than you can handle, I just wish that He would quit testing my limits.
I'm sorry that I just seem to be complaining, I guess that I just need to tell someone that is truely going to understand where I'm coming from. Everyone else tries to understand but if you haven't been there it's really hard to relate.
Earl has recently started to have cramps and twitching in his neck, and his coughing is very weak. WHAT'S NEXT? I just wish we could know what to expect to come around the corner next. I so HATE this disease! Thank you for just being there to listen!
I like to think that we have adjusted to this fairly well, but sometimes I feel like I just want to curl up in a corner with a blanket over my head and bawl for a month. We have three kids(11, 9, and 7). Our 9yr old girl has cp and the 7 yr old has ADHD. They were to young to really understand when all of this started, but are now starting to get a gist and acting out. The 11 yr old has been seeing a therapist for about a year, because we had some major lashing out issues. (He has ADD) I know that God never gives you more than you can handle, I just wish that He would quit testing my limits.
I'm sorry that I just seem to be complaining, I guess that I just need to tell someone that is truely going to understand where I'm coming from. Everyone else tries to understand but if you haven't been there it's really hard to relate.
Earl has recently started to have cramps and twitching in his neck, and his coughing is very weak. WHAT'S NEXT? I just wish we could know what to expect to come around the corner next. I so HATE this disease! Thank you for just being there to listen!