just found out

[Al]

Hi Barry. It does take longer to atrophy in some that others. The general shape of the muscles and how big they were to start with will influence it. Body builders will probably take longer. Mine started gently went crazy and are slowing down now but so am I in general. As you saw in the hand pictures not much muscle left there and my calves are getting a bit skinnier. People still say I look good though. I just tell them "You haven't seen me naked" That usually throws em off. LOL. Have a good one. AL.

 

[xsparklingwinex]

Thanks for the tip BWK :-D

 

[Barbie4]

Books

Here are a couple of extra titles you might be interested in:

"Morie, in his own Words" a helpful little book on keeping a good attitude through ALS and lifeskills in general.

" I remember running, The year I got everything I wanted and ALS"

Barb

 

[Beebe]

Hi Barbie

Hi Barbie, Did you read The Jennifer Estess story, Tales from the Bed. It was very good reading enlightening. The movie is coming out in January 2007 on Lifetime Channel. She and her 2 sisters started project ALS. They fought for stem cell research here in U.S. Well, they are doing it at Columbia University in N.Y. City. It's privately funded of course. Just a little input. My Best to all, Beebe

 

[cartman]

scuba

when i was first diagnoised with als my physician, a female neurologist, looked rather sadly at me and said, "their is little we can do for you, our job is to keep you comfortable as this terminal disease runs it's course." she referred me to university in st louis where the chief neurologist ran many tests and confirmed the diagnosis and told me i was in the latter stages of als. now 6 months later i understand both of their candid statements. i am confined to a motorized scooter, my muscles twitch from feet to neck, have difficulty breathing and eating and experience significant skelatal pain. i am blessed with caregivers who help me maintain my sense of humor and other than those times when i need help treat me as a well person. there is no time frame with als. it treats each of us on it's own time schedual. i would advise not to look for magic bullets, but do take those supplements that make you feel better. seek what makes you comfortable. fill your day with those things you can do. each little plato with als will change and leave us with a few less phyical things we can do, just remember to concentrate on those things you can do, not the things you used to be able to do. we are all here for each other and that makes each day worth the effort.

cartman

 

[liz]

Hey Guys

Cartman -

I had such a different experience once I got to the ALS Clinic. The doc there refuses to call ALS a disease - says its a disorder we're just needing to learn to manage better. He corrects his staff any time they say otherwise. I'm not saying the guy's got his head buried in the sand but the message is "hang in there and be hopeful" - none of this go home and wait to die business. I think the professionals really need to be made aware how big a difference their "bedside manner " makes in how well we feel and do.

Scuba-

I don't think anyone can really tell you exactly what to expect next - there is such a variety of ways this disease (oops - disorder) progresses. Sample the threads and you'll sample the possibilities.

Barry - What is grape seed extract supposed to do for us?


Liz

 

[dianelynn17]

My Precious Mom

:neutral: Hello everyone,
I wrote to you all about Mom being diagnosed with als. Well I can see she
is getting weaker but her eating is still good. She hasn't choked as much since
she is taking her Rilutek. I guess I am wanting to know what all we can do
when she gets to the point where she can't get out of bed herself or wash
herself in sink in mornings or walk out to the kitchen to the table. Or get
up at nite to go to bathroom. I know all this is going to happen and we have
an appt. on sunday to talk to the hospice people. This is so hard to watch my
dear lil precious Mom like this. I can't even imagine how it must be for her.
Her speech has gotton worse. I just hate this. She lives with My Sister and Brother
and I am so blessed to have her with them. I had to quit my job so I could take
care of her and be with her. I am there mon-fri 8 to 5. I feed her her 3 meals
and take her for rides and just spend time with her. I want to make every
second count. I lost my Daddy 2 1/2 years ago and was with him to the end.
Its hard to go thru all this again but I know God will give us all the strength
to do all we can for Mom and help keep us going. I try to put on a happy face
and laugh and its easy but its getting harder. I sometimes hope God will take
her before she really gets bad and I don't want her suffering. What really is
hard also is she knows everything that is happening to her. Wow. What hell
that would be. She still walks with her walker but slower now. We have a bath
aid twice aweek to help us but soon she will have to go. I really hope hospice can
help us. When I get home I keep a journal like I did with my Dad. I thank God
for letting this be a Good day with her. with really no problems. I wake up and
pray that this will be a good day with Mom and she will eat good and not
choke. It really is taking a tole on me. Don't get me wrong, I wouldn't have
it any other way and I am so Blessed to Have my sister and brother there with
her taking good care of her. They both have full time jobs. If I have said this all
before, forgive me. I just need you all out there right now. It gets overwhelming
as you all may know. It took 1 year to find out what was wrong with her. that
is what sucks also. It mimics so many other diseases. How do I communicate
with her when I can't understand what she is trying to tell me? Get a pad out
and let her write it down for now. I did today but when you are out and about
and she is trying to talk .. and you can't understand her? its just
so hard. Thank you all for being out there and here for me. You all are
wonderful folk with your own problems but we are all here to help eachother.
Please help give me advise on this. If anyone has had a loved one in their
later stages could you explain to me what you did and what all happen.
Thanks so much and God Bless You and Your families.
Diane