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ramonadegraaf

New member
Joined
May 14, 2010
Messages
1
Reason
CALS
Country
CA
State
bc
City
bamfield
Hello there!

I have been diligent in trying to understand and believe everything the ALS clinic in Vancouver has been telling me since June of 2009 when my brother Ray was diagnosed with bulbar onset als.

now, I'm confused. and dazed. and trying not to be pissed off.

Okay, we had a wee crisis. Ray is coming home tomorrow. On bipap now. He had a PEG in 5 weeks ago.

here is the thing. We told the ALS clinic in Vancouver that we are PRO PRO ventilation. I even read the ALS manual and other info

I thought I had all the info i needed. I am looked to by my family to bear good information and advice.

NOW THEY ARE TELLING US THAT ventilation is a big deal! And and and

Ray still have use of his arms and legs. The hands are getting weak. yes, when he is wheel-chair bound, his care will be more complex.

BUT REALLY, I MEAN HONESTLY....does he need to be in a residential care facility when he needs a ventilator.

He can still run after his kids!

DAZED CONFUSED and feeling just a wee bit lost (although I have radar and GPS!).

any comments, help, questions would be so so wonderful.

I am feeling a bit like I have only gotten 1/2 the story from the ALS clinic and feel like now they have pushed me off the dock into the cold water.

argg

Ramona de Graaf
 

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I can't believe they told you that! That is the clinic I go to and I have a trache, am at home and doing very well.
The people at the clinic were very supportive and we have a great relationship. You must have caught them on a bad day.

Click on my name and go to my home page where you can read all about my experience and life with a trache and vent.
 
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