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alliebt

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Jan 18, 2006
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Hi...

I am engaged to a sweet man whose mother was diagnosed with ALS about three or four months ago. When I first met his mother, she was happy, independent and a beautiful woman. She still is a beautiful woman, but it has been a painful experience to watch her lose the ability to move and she is quickly losing her ability to communicate.

Last January she was symptom free, but the ALS has progressed very fast. Between May and October, she went from needing a little help walking to being completely wheelchair bound and unable to move her hands/arms. We try to see her as often as we can, however we are shocked at the change in her from week to week. What things can we expect to see? Every website I have been to has been to generic and she seems to be progressing much faster than some sites say.

I am a Support Worker by trade, I have worked with individuals with brain injuries, developmental delays and so forth. I am comfortable with the care of physical needs and have been able to help recommend certain devices (ramps, transfer circles, lift belt), but am not familiar with the emotional support part. What can I do to help her deal with her ALS, and how can I support her husband (primary caregiver) and my fiance deal with "losing" their wife/mother?

Lastly, slowly over the last couple of weeks, she has begun to lose her ability to talk. What options or suggestions are there to help her communicate her wants and needs? She can barely move her arms and hands already, so communication boards seem a little out of the question. Is there something that I haven't come across in my research that will work better?

Thank you so much for taking the time to read and reply to this post.

Sincerely,

Allie
 

TBear

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Hi Allie:
Sorry that you are here, but encouraged by your deep involvement in your future mother in law's state of health.

Everybody approaches dealing with ALS differently since the progression is pretty much an individual thing. My wife progressed rapidly as well, and it was difficult to keep up with the changes. We were well served by OT's, Speech Therapists and of cource the neuro's at the ALS clinic in Toronto to help with the equipment needed to maintain us. That's a start.

Communication is an issue that can also be addreseed there. There are many devices used (and probably a lot more since I was an ALS caregiver). We used a series of winks and nods to communicate when e were no longer able to use the other technologies.

My suggestion on the emotional stuff is to try diginify her and treat her as if she wasn't incapacitated. Physically she may be failing, but mentally she is probably accutely aware of everything going on around her. In other word stuff that interested her before probably still interest her.

Good luck and come back here whenever you need to!

CHeers

T.
 

Al

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Hi Allie. Sorry your almost a mother in law as I call them is having the problems that bring you here. I see by your post that you are in Calgary. Being a fairly large city they may have an Augmentative and Alternative Communication (AAC) Clinic. In Toronto it is at the Toronto Rehabilitation Institute. They do a comprehensive assessment, prescribe voice output and writing aid equipment as well as training and support as needed. I will be using their services soon and will let everyone here know how it went. If there is a facility like this your almost a mother in laws Occupational Therapist would know. If she is computer literate there is a company in Edmonton that offers as they put it " Solutions for people with disabilities." I picked up one of their brochures at a symposium. They have a website at www.madentec.com You could check out their site to get a brochure of their products. There are more like them but that is the only one I have the information on that is handy right now. As for the emotional support thing I find just a simple hug and a kiss go a long way.
 

alliebt

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Jan 18, 2006
Messages
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Thanks

Hi

Thanks for the replies. I have been coming here everyday now to get more information about my future mother in law's ALS and how I can help.

I am inspired by many of the users who have ALS and are able to provide insight and advice.

Allie

PS. Some of you may know a friend of my fiance's family who passed away from ALS last year, Chris (aka ranger03).
 

Al

Moderator emeritus
Joined
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Messages
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Country
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NW of Toronto
Yes Allie we did know Chris. He was a frequent visitor here and is missed by a lot of us here.
 
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