running a little low

[cris]

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!

 

[Al]

Hi cris. I have a Tracker Pro system with an onscreen keyboard for typing. I got it from my OT at the ALS Clinic. You might be able to get it through ALSA/MDA down there. You're not complaining. Just telling it like it is. Feel free to vent or rant. We all do it once in a while. Judging what's next or when is just about impossible. Some of us could tell you what came next but Earl might be completely different. Sorry I can't give you any better answers.

AL.

 

[hopingforthebest]

Earl

Hi Cris

So sorry that you are going this awful disease. I hope that you are seeing an ALS specialist, they are your best resource and will help you and indeed should. Reach out to them for anything you need to make your lives somewhat easier in any way.

Your children are so young, my heart breaks. I will be praying for you all.

Patty

 

[lostinlouisville]

Hi Chris

I am truly sorry for what you are going through and will keep you in my prayers. I can not relate to the care giving of your husband but I have been ill for about 8 months with only God knows what. But I can relate to the trying to care for special needs kids and my heart goes out to you. I have 7 three of them 25,23,21 out of the house and then I decided to adopt special needs kids. 10,6, and 4 year old twins. My 10 year old is in a treatment home now, he was the only one we did not get at birth and he was severely abused and is having mental issues with that now. My 6 year old was cocaine ,alcohol baby and has chronic lung disease, type one diabetes, and ADHD. My 4 year olds were cocaine oxycotn babies and the boy has CP, ADHD and mildly retarded. The girl has brittle bone disease. The challenges are great but the rewards a wonderful. Children are such a blessing but I know they can be a handful, I just hope you have some help with them and can find a way to over come your challenges with your husbands problems. I really will keep you in my thoughts and prayers and I hope you find some comfort in all the hugs and love you get from those little ones. I think God sent mine to save me not for me to save them. I am truly blessed.

 

[cris]

First of all I would like to Thank You all for replying to my post. I can't tell you how much it means to me to know that there are people out there who understand. Thank you Al for the idea about the onscreen keyboard. Earl has an appt. with his spec. next week I will ask about them.

"hopingforthebest" yes Earl has an ALS spec. Thank You for your prayers.

"lostinlouisville" I couldn't imagine taking care of so many children with spec needs. You must be truly blessed with alot of LOVE and patience! It sure puts life into perspective.

Again I truly appreciate your replies to my post. I don't usually let it get me down, sometimes I just lose my "happy." Thank you for your prayers, and I will also be keepuing you all in mine!