Monday, December 16, 2013

I am sharing with you an early 

<Merry Christmas and a Happy New Year>

... in light of my visit to OSU tomorrow  (Tuesday 12-17)  for

 my surgery to insert a PEG feeding tube.  I am at 50% of 

my breathing capacity,,,and so it was now or never to have 

this done.

I had to make the decision, as to go with a ventilator 

following surgery or not  

if need be...if it helps...

in order to continue life longer with the ALS/Lou Gehrig's 

Disease....

and the decision is yes for the moment pending any issues.


I hope for the best, but, sometimes things don't work out 

that way...and I just want to have things in order just in 

case.

The connections I have made with my 'friends' , have been a

 great 'positive' in my life...esp following my ALS diagnosis

 earlier this year.

Hopefully, the timing of this message was not needed....and 

I will be chatting with you once again in the future after I

 am back home. 


The best of the holidays to  you and your families :),


Lindsey


Wednesday, December 11, 2013

Unexplained choking ~ laryngospasm <> PANIC MODE!!!

 laryngospasm, the vocal folds go into a spasm that closes off the airway. The person may panic and be unable to breathe.


THAT^^^ is one of my biggest issues^^^ that comes on VERYquickly....and puts me into a panic mode.

Again >>>It begins extremely quickly......and is instantaneous. 

I just emailed this to my family members>>>"YOU should ALL  read this and be aware in case I need your help!!   Thank you."

From the MDA website:

"Unexplained choking" <>
One form of choking seems to come on out of the blue, even
 happening when the person isn’t eating anything. 
A laryngospasm is a sudden tightening of the throat which 
occurs when liquid or saliva go the wrong way into the 
larynx; it also can be triggered by acid reflux, smoke, strong
 smells, emotion, alcohol, cold or rapid bursts of air, and 
even spicy foods.

In laryngospasm, the vocal folds go into a spasm that closes
 off the airway. The person may panic and be unable to 
breathe. After a few seconds, it’s usually possible to suck in 
a thin, wheezing breath.

Laryngospasms usually clear before the person loses 
consciousness. There are different tricks for shortening their 
duration.
 Encourage the person to try:
  • holding the head back and taking a quick “sniff” to break

  • the breathing pattern;

  • swallowing repetitively;

  • exhaling in a gentle sustained breath, like a long soft 

  • whistle without puckering the lips;

  • breathing in slowly through the nose rather than mouth;

  •  and

  • pulling in breath from the belly rather than breathing
  •  
  • shallowly.

Some people use Lorazepam Intensol — a concentrated 
liquid that must be kept refrigerated. Place 0.5 ml under the
 tongue or in the cheek, and let it be absorbed by the 
mucus membranes in the mouth.

During the spasm, caregivers should stay calm and offer 
reassurance, gentle back rubs and support. Although 
usually not dangerous, this experience is exhausting and 
upsetting for everyone."

GO HERE>



Friday, December 6, 2013

I want to be here for Christmas with my family...PEG insertion 12/17/13

As of today (12/6), 11 days (12/17) and waiting until my surgery to have inserted a PEG feeding tube into my stomach.

Lots of things on my mind right now....
finding it quite hard to focus.

I have to make the decision as to whether or not to accept going onto a ventilator IF  things don't go so well during the surgery......

I know I am the only one who can make that decision.

I am living in a state of animation right now......

I want to be here for Christmas with my family.

ALIVE and well.


                            I have a lot to discuss with God.

Wednesday, December 4, 2013

How many times a week are you asked, "How are you?"

How many times a week are you asked, "How are you?"



by Carol Eustice

"How many times a week are you asked, "How are 

you?" It seems to roll off the tongue after "Hi" or 

"Hello." Literally, "Hi, how are you?" is run together in 

such a way that you wonder if people even know 

what 

they asked, if they want a real answer or if it has just 

become a robotic greeting.
The question doesn't only come from your dear 
family and friends. People you pass on the street, 
people on the phone, just about anyone you 
encounter for any reason may toss that overused 
question at you.
We all realize that people have to say something.
 There has to be some sort of opening line; otherwise,
 we would just be nodding and grunting at each other.
 But the question feels strangely akward sometimes.

The Obligatory Question

The obligatory question really calls out for the 

obligatory response, "I'm fine" or "I'm doing well." 

That's how most people reply, even when they are not

 fine or doing well.
But to say you are doing well when you really are not
 can feel inappropriate and even annoying to people 
with chronic health conditions, such as ALS. It is 
honestly difficult to exchange pleasantries when you 
feel anything but pleasant.

The Genuinely Interested

There are people who ask the question and genuinely
 want to know how you are doing. They ask for the 
right reasons and listen to your full answer because 
they truly care. They don't try to one-up your story.
 They don't offer unsolicited, off-the-wall 
solutions. They simply care. You might expect this 
from your closest family members, but sometimes it
 can be a person you barely know who seems to care
 the most.

The Quickly Disinterested

It also seems that there are those who are interested
 in your response, but with one provision -- keep it 
short. They don't want you to say you are doing well if
 you're not -- but they aren't interested in every detail
 from your last doctor's appointment either.
If you offer too many details, the person may not fully
 understand. They may not feel comfortable asking 
you to explain. If this is the case, too much 
information can cause the other person to become 
disinterested, feel awkward or even to be sorry they 
asked.

The Bottom Line

Living with a chronic disease is challenging. It is 
helpful to recognize problems you are having and 
want to talk about how you are doing, especially when
 asked. It may be best to discuss your health to any
 significant degree within a support group or with a 
select group of people you know will understand.
If you aren't finding that select group easily, be wise
 and disclose whatever you want to your journal Yes
, on a daily basis, tell it to your journal. It's your 
outlet, yet it's private. Your journal will never shy 
away, become disinterested or disappoint you."
^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^
Thank you Carol for your insight and for putting this 
into words for me :)
It helped me to share these feelings with those of you
 who are reading this blog.