great place to learn more

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ross

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I have been reading this site for 2 days now finally signed in my mom has had PLS for around 10 years now and has progressed very far over the years I am becomming concerned that it is starting to progress to ALS I am probably the only one that can understand her and its getting difficult for me I have been looking into information on this happining and it says it can I am just trying to figure out how to tell I guess the only thing she lacks it trouble breathing she is such a trouper I am so proud of her and her bravery thru all her pain she has become so crippled up with muscle degeneration she has gotten to the point that she does not even want to go out even to Dr office's we have been fighting with brace shops to create a brace to hold her head upright since it lays on her chest now any way I got off the subject ,this site seems to have a lot of great talk on all the ALS and PLS even with all I have seen and dealt with along with my mom I have learnd some things from here

GOOD LUCK to everyone and keep strong we are all in this fight together

I will try to answer and/or help anyone with a question not that I know a lot ,just 10 yrs experience
 

ross

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was I wrong

I really thought I would get replys I would love to communicate more about different areas of ALS and PLS
 

Al

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Hi Ross. Welcome to the site. Give it a bit of time. We have almost 1500 members but on any given day there are only about 10% participating. We are not a big site in the grand scheme of things but it is a very personal site with a lot to offer and people such as yourself are our best asset. AL.
 

ross

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Thanks Al

Hi Al
I knew I would hear from you our super moderator ,gotta love that title, you do a great job welcoming new folks as well as sharing your knowlege
 

hboyajian

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Ross, I have just gotten home from my mother's house today, so am again at a computer that operates reasonably quickly. Just saw your post. My father also had the problem of being unable to hold up his head. He tried 2 different kinds of neck braces. One was called a headmaster and fit between his chest and his chin. it was fairly easy to get on and off, but even with foam padding hurt his chest. The other was a spine...something, can't remember the exact name (sorry). It was a padded plastic frame that went from his lower back all the way up to the back of his head. Straps went around his chest and his forehead. It worked to hold up his head, but was somewhat uncomfortable and difficult to get on and off. Wish i could tell you about something that really works well. Good luck with it.
 

ross

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bad news

Mom took a fall and is in hospital since tuesday she has several cuts on her head required stiches and a dislocated shoulder luckily it was the one she cant use anyway ,if thats lucky i guess at least it wasnt the one she can use a little bit ,since they have her in the hospital they have been giving her more tests its odd when I have all the nurses asking me what PLS/ALS is all about they just dont ever deal with it much especially as progressed as hers is ,they did some swallow tests today and they are probably going to put a feeding tube into her stomach tomorrow she is just struggling so much to eat anymore she cant get full I feel so bad for her she can only talk to me nobody else can understand her when I get there she always asks "Can I go home yet ,I wanna go home "its hard to say no not yet . she is such a strong women she wont tell anyone when something hurts except me maybe because she can talk to me easier but even I gotta pry it out of her my dad sits with her a lot but he is deaf in one ear and can't hear out of the other so I play translator between the two of them and he is feeling very guilty because it was him that was helping her get from wheelchair to her lift chair I am having trouble keeping him from thinking its his fault
Sorry I see I am babbling again its just great to be able to vent a little bit with people that understand how ugly this can be Thanks for being here I am trying to get dad to stop in and do some reading and maybe some talking . Mom cant she can not do more than move mouse to play games again, Thanks, yawl are great
 

liz

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Ross -

This could be an opportunity to get some (more?) help into your parents' home. Push the doctors and nurses at the hospital to make referrals for any home care that your mom needs. Maybe OT can also get involved while she's still in the hospital to help get any devices or adaptive aids she needs.

It sounds like you've got your hands full. Your folks are fortunate to have such a good son. Guess they "raised you right". Good luck.

Liz
 

ross

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thanks Liz

thank you for your comments that feels good to hear, I do all I can while raising 3 kids and running mine and Dads business, and Yea, I like to think Mom and Dad did a GREAT job with us . I just got home from the hospital and maybe because its late but I cant figure out OT , we have talked a lot to the home health care people and as soon as we get home they are going to stop by and evaluate our situation she just gets so scared when someone else is moving her around but I know she is going to have to let some they are hoping they can do surgery tomorrow to put her stomach plug in and then she can start gettin more nutrition without so much work and then we can get her home and comfortable again
 

Al

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Joined
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Hi Ross. Hope your mom is feeling better and you get her home soon. OT is the Occupational Therapist. AL.
 

ross

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it cam to me

Last night whileI was in bed it cam to me it was just one of those mind blocks I guess but thanks
 

Al

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Joined
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PALS
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You always wake up in the night with the light bulb illuminated saying EUREKA! Now I remember. Happens to us all. Even before this fun began. AL.
 
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