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zombie_mummy

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PALS
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CA
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My name is Ellen. I've had ALS symptoms since 2005. It began with weakness in my right hand and slowly spread throughout my body. I was diagnosed in May 2007 - at that time I was mother to 5-month-old twin daughters and a 3-year-old girl. My husband had to take parental leave because I couldn't dress my babies or change their diapers. In 2008, I began to have difficulty speaking. In 2009, I became wheelchair dependent. In 2010, I was hospitalized with pneumonia and was given a tracheotomy.

Since then, I have been completely unable to speak and have relied upon a communication device for speaking. Currently I rent a Dynavox from my ALS clinic at Sunnybrook Hospital for $80 a month. It is very slow, crashes a lot and breaks down frequently. I'm on my third machine right now because the previous two have died.

I live in the Chronic Vent-Assisted Care Wing at Toronto East General Hospital. The staff here are skilled and kind - but I'm homesick. I've lived here since December 2011 and before that, I was in the ICU at Toronto Western for 17 months, waiting for a bed.

I don't know why I stubbornly cling to life. I guess maybe because my kids are still young...

Any way, I'm here and thought I'd say HI!
 

MaxEidswick

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>I don't know why I stubbornly cling to life. I guess maybe because my kids are still young...

Hi, Ellen -- I am proud to meet you. I'm in my 4th year, but you can read any/all of that stuff on my blog.

>Currently I rent a Dynavox from my ALS clinic at Sunnybrook Hospital for $80 a month.

you might check with your local MDA/ALSA resources, they can often help. There are many active Canadians on this forum that might provide direction. Also CALS that have brought their PALS home -- it's hard but often doable.


>Any way, I'm here and thought I'd say HI!

Hi! and welcome!

Max
 

Atsugi

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5,187
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Ellen, I'm pleased to make your acquaintance. You're brave and sacrificing for your children. Thank you.

I might have a computer you can use. Free. PM me if you're interested.
 

zoohouse

Senior member
Joined
Jan 14, 2013
Messages
958
Reason
CALS
Diagnosis
07/2012
Country
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State
B.C.
Hello Ellen, welcome. I am glad that you found this site and are able to use it. I don't even want to imagine how difficult things are for you. I was wondering if you are able to move your mouth to form words, as there is an attachment to allow you to talk if you can. There is a gentleman here that meets us at our ALS meetings that has a trache and he has it, and I must say that he has it timed so that you don't hear a break in his speech. My husband uses non-invasive ventilation 24/7 but has the ability to swallow and speak after taking a breath from his sip & puff ventilator. I dread the thought of my husband getting a trache as I do his total care completely on my own, and I know that tracheostomies take a lot more care. I am an RN with 33 years experience, and there are no ventilator assist care facilities any where near where we live, and I couldn't imagine him being anywhere else but here. Anyway, I will be adding you to my prayers. My husband uses a Lenovo tablet, with dragon naturally speaking and Kobi eye gaze, and from what I understand it is a lot more reliable than the dinovox.

Paulette
 

patrick123

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Joined
Oct 4, 2012
Messages
436
Reason
PALS
Diagnosis
09/2012
Country
US
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co
Hi Ellen,
Welcome to the forum. You will find a unique group of wonderful and amazing people. We all have different challenges we must meet. But we all share the same spirit. We walk a path that few will ever experience or even comprehend. For me my strength lies in family and those around me. And this forum. It allows me to get angry, to feel joy. In just knowing that I am not the only human being going through this.
 

CGARS

Distinguished member
Joined
Apr 24, 2012
Messages
308
Reason
PALS
Diagnosis
06/2011
Country
CA
State
Ontario
Hi,
I use the Tobii I-15, that I rent from the AAC.
You may want to contact them and see if you can get one too. It's a pretty good machine.
If you qualify for ODSP, they will pay the rental cost.
Casey
 

zombie_mummy

New member
Joined
Jun 17, 2014
Messages
3
Reason
PALS
Diagnosis
05/2007
Country
CA
State
Ontario
Hello and thanks for the warm welcome, Dalvin, Max, Atsugi, Paulette, and Patrick! I'm very pleased to meet you!

As far as the computer goes, after nearly 4 years of using Dynavox, I am definitely looking into other options! I recently heard about an aerospace company that is developing glasses for ALS patients that use eye-tracking and have built-in speakers. They're sort of like "Google Glasses for PALS" and they're trying to raise money via Kickstarter campaign. Since I'm a Newby, I'm not allowed to post links - but if you search for "EyeSpeak", I'm sure you will find their page.

The head of the company's father has ALS, so he basically started this project for his Dad, which I think is quite sweet!

Disclaimer: I am not a part of this company, just an interested PALS who would like to see this product on the market. :)
 

MaxEidswick

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Joined
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> but if you search for "EyeSpeak", I'm sure you will find their page.
 
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adozi

Distinguished member
Joined
Dec 28, 2011
Messages
232
Reason
PALS
Diagnosis
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Welcome. You might try emailing the Team Gleason foundation. They are giving away tablets with Tobii eye mobile eye gaze technology.
 

MaxEidswick

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Joined
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>Today at 01:59 PM. Reason: Links to fundraising pages are not allowed

oops, sorry :-(
 

zombie_mummy

New member
Joined
Jun 17, 2014
Messages
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Reason
PALS
Diagnosis
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Country
CA
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Sorry Max,

I tried posting about it in the gadgets thread, but they declined my post, too. :oops: I think that you could look at the youtube video which just has information on the technology but no fundraising.

I did make a pledge to their kickstarter but otherwise I have no financial interest in their company... :)
 

Nikki J

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Mar 22, 2012
Messages
7,933
Reason
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Diagnosis
04/2014
Country
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State
MA
The ban on fundraising has to be applied uniformly unfortunately. A lot of the links i see look very worthy but we can't pick or choose. This technology looked very cool though!
 

Santa joe

Senior member
Joined
Oct 14, 2013
Messages
637
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
South Carolina
Ellen, welcome to the most amazing site there is for ALS. You will find the most compassionate and caring Pals and CALS here. Not being with your children must be horrible for you. Know that you are not alone and we will all be here for you.

Debbie
 

tinyandme

Distinguished member
Joined
Dec 17, 2013
Messages
219
Reason
Lost a loved one
Diagnosis
10/2013
Country
Ca
State
On
Hi Ellen! My name's Amy, hubby is Hayden. We're from Barrie and attend Sunnybrook as well. Hayden was just diagnosed this past fall
 
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