After ALS...

Status
Not open for further replies.
Just to be technically correct, CALS certainly do suffer emotionally during and after ALS, but it's not technically PTSD. It's more properly called PGD--Prolonged Grief Disorder.
 
Just an update...We now seem to be getting into the "weird". The stuff that happens to terminal bedridden patients on vents. Stuff that nobody has much experience with and has no real treatment plan. Things like unexplained fevers that come and go, strange rashes, blisters, nails coming off, resistant bacteria, but no pressure ulcers thankfully.
 
Sending you strength and hugs Gil
 
Gil thanks for updating - those are weird. I've not heard much about these things but have heard of sudden psychoses common after some years on a vent.

The body is not designed to be stuck in a bed with a machine pushing air in and sucking it out that is for sure.

Hugs to you as you battle each day.
 
Its not so much the vent as it is just being in the bed. And I am sure that there are people skilled in these maladies, but getting them to the house is the problem. We are DONE with the ER. 14 hours for an xray, bag of saline, and 5 min face time with a doctor is not happening ever again. All this can be done at home...
 
Great thread. I've wondered who I'll be and what I'll do after. It's been my entire focus for 20 months. We've had such a short time together but he is truly the best man. I've grown to love him more each day as I saw his strength, courage and humor thru this.

I wonder if I'll ever laugh again.

Sherry
 
Status
Not open for further replies.
Back
Top