11 months after diagnosis to needing a trache

[lostin]

feb2010 first symptom dragging left foot
sep2010 diagnosed
aug2011 can only move hands and feet a tiny bit and turn my head left

22aug go for a feeding tube op doc tells me i should be having a tracheotomy! But i can't face it

28Aug...been salivating for 4 hours and still going
I'm just a shrivelled up dribbling blob in a big chair
not living just existing
it's not f**king fair
most people go for years after diagnosis to get to the point i am at

MY life story and blog here This_is_MY_life • View topic - This is MY life

 

[rcharlton]

Sorry to hear about your ongoing ordeal and rapid progression.

It is definitely not fair. There is no rhyme or reason to this disease.

I wish I could help you beyond just telling to try and hang on.

Keep up with the blog.

 

[Ms. Pie]

No it isn't fair at all. I wish I could help you. Who is taking care of you Dear?

 

[lostin]

i have 2 Thai ladies staying with me

 

[susanf]

I'm so sorry. This really sucks. Are they capable of taking care of a trach?

 

[lostin]

don't want tracheotomy to prolong this existence. I understand now why peter smedley from my birthplace went so early to dignitas when he could still walk and talk. he knew what was to come. BBC documentary of him going is on youtube but i don't think we are allowed to put the link here. I wish I had done the same.

 

[Lobster]

I wake up every day and consider ending it all. I wonder if my paid caregivers will show up. I wonder if I am only prolonging my misery.

I wish there were a place where we could all get the care and compassion we need to let the disease run its course.

I have chosen to not have invasive ventilation or even a feeding tube. I would consider a feeding tube if I thought I could get enough care... and compassion. I have 2 paid caregivers, one is nice.

I wish I had some advice.

 

[Ms. Pie]

Don't give up Dear Lobster. There are good people out there. Sometimes it takes a little longer than we'd like before they show up.
Love,
Marta

 

[notme]

Lostin--you definitely got a raw deal. Can you see perhaps a second opinion on the trache? Perhaps a bipap would work or other measure. Some, when the throat muscles involved, can have an opening made for breathing and can live years and years with them. Often done with people with throat cancer. A stoma lets you breathe (with covers that can help keep out infections)

Your ladies, at least from your blog, seem to care for you quite a bit. There are always choices!

Lobster--you'll find that good caregiver. Don't let that be your only reason not to consider a feeding tube. I can understand not wanting to vent--but nutrition is so important for overall health.

I wish I had the money to open a house here for only PALS with no family to help them. There would damn well be good caregivers that worked there--because I'd live there and make sure of it!

I've seriously considered how much money was involved in getting a large enough house to start an assisted living facility of my own where we could take in PALS with no support. There have to be grants for such things....heck, Florida is ALF city--they are everywhere!

Lobster and lostin--there are always people here willing to help and listen. Lobster, you can contact the ALSA if you're worried about your caregivers--or get that feeding tube than look into hospice even. (I believe some PALS on here have been on Hospice care for quite a while and thriving with proper care)