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Jan 29, 2008
Hello all/
My first post here..


My mother is 75 years old(living in Toronto Canada) and was walking(albeit slowly) in Aug 2007. She is now bed-ridden. She had her first infusion of IVIG Dec 14, 2007 and her2nd infusion Jan 15, 2008. There has been no improvement and a rapid deterioration since Oct 2007. Also a general weakening. She has had all the blood tests MRI, EMG, Bone Scan, Cortizone shots, etc. She is hospital at the moment until she feels stronger. At home we now have a caregiver, installed a step lift, obtained easy lift chairs, hospital bed, railings etc.....

She has very little movement in her lower torso and now needs to be moved from side to side in bed although she has all sensory feeling just no power to life her legs while lying in bed against gravity. Also inspite of the IVIg she has a global weakness 30%-40% of her body. She has some problems with bowel movement.

She was confirmed with ALS yesterday.....we are devastated....

Here rapid decline has alarmed her neurologist and we are now comming to grips...not sure what to expect, decisons to be made as she gets worse(feeding tube, breathing, bowel movements, etc.)

She is in hospital for the past two weeks since her 2nd IVIg treatment. We had a glimmer of hope if it was CIDP but now this is a death sentence.

I will come back with specific questions and appreciate your support.


ashley pereira, PEng, MBA, PhD
Hi Ashley. Sorry about your mom's rapid decline. One of the really crappy things about this disease is that there is no predicting whether it will progress slowly or rapidly. Hopefully she may plateau as some of us do and be with you at home again. Do you mind my asking if she is at McMaster or Sunnybrook? Feel free to ask any questions you need.
Hi Al:

She is at Brampton Civic with visit to Toronto General for her diagnosis.

Hello Ashley- Sorry to hear about your Mom. This disease is never easy-not for the
PAL and not for the family. Regards, Cindy
Can someone point me to articles or expereinces in this forum re: RILUTEK and side affects.
Finding Info

Sorry to hear of your mom's DX. You found the right place for help. You might try the search drop down on the menu bar when looking for specific information.
please help me with a communication device

my mom also is diagnosed,her current speaking device doesnt work right and she gets very frusterated,shes 56 and has the bulbar and cant speak at all any more,can anyone help me find a good typing device,or a link with info on different typing/speaking devices available .my email is
Thanks. She will be visiting the ALS clinic on Tuesday to see abour RILUTEK.
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