please help

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Linee

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Mar 11, 2005
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My MoM has been diagnosed with als. the drs have told us this but on paper they have not put als. she is progressively getting worse every day. last week she was barely walking with a walker, this week she cannot Move. she says that her body gets very stiff. she cannot walk anyMore. she cries all day long. she can't find a place for herself, she is very uncoMfortable. she aches all over. her right hand and arM is also effectived, she can;t feed herself any More it is heart breaking to see her like this. i don;'t know where to turn and i don;t know how to get the help that she is hopefully intitled to have. we need help. we have a care giver 24/7 but they are getting worn out. My MoM is having probleMs sleeping. would you belive that one year ago she was recovering froM by-pass surgery with no signs of Muscular probleMs. all this have ocurred in one year. could soMeone please help Me get the help that we need. we live in the toronto area.

thanks for listening as i write this the tears are rolling down My face i feel so helpless
linee
 

Al

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Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi linee. i know you feel overwHelmed by all tHis. Has your motHer been referred to tHe als clinic at sunnybrook Hospital? if not ask your doctor for a referral. Have you registered witH tHe als society of toronto? tHey can put you in toucH witH people to Help you and your mom. click on one of tHe links above for tHe als society of ont. and find tHe toronto numbers and tHey will Help you. good luck.
 

me

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Linee - you have come to the right place for your first step. people here should be able to give you good information and also support, so stay with us. melissa
 

Linee

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Dear Al thanks for the quick response. I contacted the ALS society today and they were very helpful. I have to register my mom with them and then we will receive the help and equipment we need hopefully. My mom has been to the sunnybrook neuro-muscular clinic. She has to do some testing then we are going to follow up with the doctor again in mid may, boy that seem so long, the waiting is the hardest. Mean while we just wait and wait for the next sign of what is to come.

thanks again
linee
 

me

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Linee - That's great it sounds like you are getting somewhere. I hope you feel better. The waiting is definitely a difficult thing. I try to think of it as time to take in and digest the step we're currently at so you can handle the next one. Hope you have a good, sunny day. Melissa
 

trisha p

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Feb 16, 2005
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Linee,

I'm glad that you've contacted the ALS Society in Toronto. I know the Ottawa chapter has been a complete blessing to me, and they have never even met my brother. If ever you need a shoulder to lean on, I am not that far away, and travel to Toronto quite frequently. We can always meet for coffee and to exchange some much needed hugs for support (you and me both). Hugs and Heavenly Hash Icecream with extra marshmallows (I always find a litre of that helps too).
 

Linee

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Dear Trisha

I would love to meet with you when you come to Toronto. I also have 3 sisters who also would love to meet and chat How can we get together, I think you could get me email from the members log in if not please let me know I don't what to post my phone number on the web

thanks again.
Linee
 

Carol Deboer

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May 7, 2003
Messages
343
Hi Linee,

Welcome to our home. I hope that you find the support and information here that will help you out. We are all a bunch of know it alls here! Also I wanted to pass onto you to contact your local Communtiy Care Access Centre. I am sure that Toronto has a local office. They will be big help to you also with nursing care, meds, and all kinds of help. I could not have kept Henry home without their help. They were wonderful. I am sure that they will be of help to you also. Good luck and I hope that you get all the support you will need from these great groups. God Bless.

Stay Strong....

Carol
 

me

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216
We are going on vacation, starting this weekend. I am not sure if we'll be around a computer so I may not get to check in until the following week. We are going to Las Vegas, will try not to go broke! Actually, we're not big gamblers so we shouldn't have to worry about losing our shirt. We'll take in some shows and mostly lounge around! Yeah! Finally,w'ere getting a chance to live it up a little. This is a break we both need from life very much. I hope everyone has a good week now that the weather is turning. Melissa
 

Al

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7,960
Reason
PALS
Diagnosis
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Country
CA
State
On
City
NW of Toronto
Have fun and don't forget the Hoover Dam and Grand Canyon are not that far away. That way you have less time to gamble. Take pictures to post when you get back.
 

Carol Deboer

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Hi Honey,

Have a great time, and have one or two for me! Margaritas that is ha....Hope you rest up, and rekindle that romance that sometimes we forget about just living our busy lifes. Will talk to you when you get home. Cheers, and do not loose your shirt, your shorts maybe, but not you shirt ha...... Love ya...

Carol xoxo
 

Timshelper

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Nov 11, 2003
Messages
154
Hi Melissa,
I've always wanted to go to Vegas bright lights, famous people, strange people whatever you want I'm sure its there. I hope you have a great time and live a little give the slots a try you may come home wealthy and giddy. Thats what winning always does for me not that Ive won a lot but I think that makes it more fun.Its so great you both can go on this trip together and like Carol said rekindle the old fires and also bring in new memories. Since your having drinks I like margaritas too but I will have anything thats fancy and has a weird name with an umbrella if your so inclined to try.Vegas is the town that never sleeps although if your drinking for 3 you may passout. I think I'm jealous I've never been anywhere, I want to go too but I'd love to hear about it when you get back. Forget about the computer when your away, I think we become a little bit too attatched to these boxes we have. Have a great time and talk to you soon.
Kim
 

me

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Kim - you're right that we're a little too attached to the computer. It's almost like going through withdrawl not using one! they had an internet cafe that you could pay $5.00 for 20 min. online. I admit, it was tempting the first day, then I made myself forget about it!

The most amazing thing was the how huge everything was. Each casino/hotel/mall covered a good city block. We walked miles and miles just checking them all out.

The people definitely get crazy come Thursday night/and the weekend. All sorts of groups of people mingling around. I think I liked it during the week better when it was just us normal folks!

Well, I gotta run for now. Catch you all later. Melissa
 

Carol Deboer

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Welcome Home Melissa,

Glad to hear that you had a great time and relaxed and played the slots and did a lot of sightseeing. I have never been to Vegas, have a lot of friends who have though, and they say it is great. I really have no desire to go, but who knows, maybe one day will take the trip just to hear what all the gaga is all about. Glad to hear that Nathan is doing better. I wish you could have a clearer picture of what is going on with him, but for now, just wait. It must drive ya nuts. I am doing better, not good, but better. The strength is starting to come back to my spirit. It takes so much out of you. Anyway, just a short note, glad your home, and yes the weather seems to be getting better. Thank goodness for that. Love ya..... big hugs to you...xoxo

Carol
 
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