First Post

[ljtaylor]

Hi Cindy M. Yes It Is A Great Idea To Have Your Friends Come In. I Have Had Als Since 2002 And Stopped Working In 2004. This Was Haerd Because I Loved Working And Being Around People And Doing Volunteer Work For My Fire Co.
This Can Get To Be Lonely When You Are Confined To A Wheelchair And Need To Be Around People Other Than A Spouse. Once A Month Four Friends I Used To Work With Come To My Place Sometimes They Bring Their Dinner With Them.
The Last Time My Husband Made A Pizza For Them. We Call It Girls Night In And Enjoy Each Other. I Can No Longer Do Anything For Myself Now But I Am Blessed To Still Be Able To Talk, Have A Brain And Fingers That Can Type Although Not Like They Used To. It Is Important To Do As Much As You Can To Stay In Touch With The Outside World Through Computers, Phone. Reading And Friends. I Also Have A Discovery I Would Like To Tell People About. I Found On Qvc Frames That You Can Record Messages On. I Plan To Have A Picture Of My Husband And Myself Together And Each Say A Few Messages Of Love To Our Grandchildren. Each Granedchild Will Get One. I Do Not Want Them To Forget Me. Those That Use A Voice Adaption Equipment Could Also Use This Idea.

My Best,
Lois

 

[lghanson53177]

Hi Al...thanks for the insight into why it may be tough for my mom to want to get out. It's hard to think like the person with ALS rather than the caregiver...I have started to notice handicap accessibility in places but I didn't think about the "if I drink something, then I have to go to the bathroom" scenario...it is hard to get her in/out of the bathroom and she needs help with that. I'm beginning to understand what may be going on internally for her with respect to how much effort it is to go out.

Because of your suggestion, I invited friends over last night for dinner and a movie. We all had a blast! Mom had not met these friends yet and they had her laughing so hard we were all crying! We ended up talking and laughing so much, we totally forgot to watch our movie. It was great. And this morning mom told me we should do that more often...it does wear her out, but the fun we had was worth it.

Thanks much for your suggestions!

Leslie

 

[CindyM]

Thanks everybody for the confirmation that having folks in is easier than going out. I like the "girls night in" concept. Might start this one right away!

On the theme of getting out and about, last night yet another family member pointed out that Sam, who we adopted from the animal shelter, seems to have some caretaker instincts in him. I did a search on the internet and found that big helper dogs can pull a wheelchair, if I get to that point, and one owner tells how her dog gets under her and helps push her to her feet when she loses balance. I think I am going to look around for a local trainer. That time I fell in the woods he just kept on going but at the very least he could be trained to stick by my side and call for help if I ask him to. So that's my project for 2007 - find someone who can help me train Sam to be a bit more helpful!

 

[sufernan]

I wish you the best of luck in training Sam! I love dogs and I think they are wonderful ....

 

[MtPockets]

A TRAINED dog is a great idea. I remember one time I fell outside and could not get up and my wife was gone for 3 hours. About all my dog could do to help me was lick the rain off my face and lie beside me until my wife came home.
I have a new one now a 1 year old cocker spaniel and anytime I'm in great pain or trouble she comes and lays with me. One day I went to sleep on the couch after taking pain meds and woke up to find her laying on my stomach with all of her favorite play things laying all over me. She was trying to make me feel better by bringing me her favorite toys.

God Bless
Capt. AL

 

[CindyM]

How cute! And did it work, Captain Al? Last night we watched the dog show on TV for the first time. We don't know much about this stuff but Sam sure did. He kept going up to the screen and pushing his big nose against it. Then he'd come over to us and cock his head, trying to tell us, I guess, that there were other dogs in the room.

 

[Crystal]

Hello everyone.
I hope everyone had a blessed Thanksgiving. We did make it through with about 30 friends and family over! I can't wait to see how Christmas will be:?:
I just want to say that I think this is an awesome site! I like reading each of ya'lls stuff. It really helps me. GranpaAl your fireman picture makes me smile. Leslie I hope that everything is going well with you. I am really happy that your mom has decided to get the PEG. My mom refuses to. She can not drink with a cup at all and was only able to drink through a straw. 1 month ago she lost that ability also and has been using like a sports bottle that she gently squeezes. I wish she would agree to the PEG because I am scared she will get dehydrated. Hospice has been EXTREMLY helpful. A little overwhelming we have a lot of people coming and going. But this is only to get started and then it should mellow out somewhat. Instead of standing at the pharmacy for hours Hospice pharmacy comes straight to our door. They have delivered very needed equipment, the nurse has come out, social worker and even the Doctor makes house calls. How fabulous! Also Leslie I was on the phone for many many hours with Medicare, social security, medicaid etc. etc. etc. Lots of luck to you. Hospice does take care of all medicare issues. There is a separate state hospice medicare funding. Gotta go I have a sick baby tonight too and she is crying. I look forward to talking with all of you soon.
Crystal

 

[hboyajian]

Crystal, is your mom able to eat blended food? My dad can no longer swallow plain liquids or eat solid food. Everything has to be a certain consistency and he eats little bits at a time with a spoon. He puts a powder call 'thick-it' into his juice so he can drink it. He has also started adding Ensure to smoothies and blended breakfast cereal. It takes an hour and a half for one meal, but he did gain 2 pounds in the last month. He didn't want a PEG tube at first, but he has changed his mind now. He is tired of eating all day long a half teaspoon at a time.