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.

Monday, November 25, 2013

"Be still, sad heart, and stop repining; behind the clouds is the sun still shining."



Like the dreary day that it is today....gray,cold and gloomy...
such is my life with illness.
My mantra for now>

by Longfellow...

"Be still, sad heart, and stop repining; behind the clouds is the sun still shining."

The Rainy Day

by Henry Wadsworth Longfellow (1807–1882)


THE DAY is cold, and dark, and dreary;
It rains, and the wind is never weary;
The vine still clings to the mouldering wall,
But at every gust the dead leaves fall,
And the day is dark and dreary.

My life is cold, and dark, and dreary;
It rains, and the wind is never weary;
My thoughts still cling to the mouldering Past,
But the hopes of youth fall thick in the blast,
And the days are dark and dreary. 



Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.

Friday, November 22, 2013

Medical Emergency Information I.D. card..................

I am working on designing a 'calling card' for myself to give to other people that I meet that includes general information I wish to share as it is increasingly more difficult for me to communicate verbally.

A 'calling card' can be  VERY helpful to those of us with ALS and other medical conditions.....

BUT...

I am thinking it may not hurt to have a separate identification card that I  can carry upon my person to show to other people.....that contains more pertinent information (beyond just a list of current medications)... related to medical issues...
This would be in addition to the medical information bracelet that I already have.  
The cards would be good for my family members to carry...in case we are together when a medical emergency may occur  and I cannot communicate .
...something for them to have handy to present to the medical provider etc. when it may become difficult to pass along information due to stress etc..

Here is a website I found quite helpful:

http://www.wikihow.com/Maintain-Emergency-Medical-Information  

an example of a medical emergency I.D. card>


I like the idea that I can have personalized cards made like a business card....
with the information I want on it 
as well as being able to pick a decorative style / design that is appealing to look at as well.....

vistaprint >>>>
http://www.vistaprint.com/vp/ns/default.aspx?GP=11%2f22%2f2013+10%3a16%3a06+AM&GPS=3018397140&GNF=1


^^just happens to be one example of the many online website business that sell this type of product.

Wednesday, November 6, 2013

today 4pm Hospice / Palliative Care visit to our home for consultation...

later today 4pm  Hospice / Palliative Care visit to our home for consultation... 
as was recommended by Ohio State Medical Center

NHPCO's  (National Hospice and Palliative Care Organization)
Standards of Practice for Hospice Programs describes palliative care as:
Treatment that enhances comfort and improves the quality of an individual’s life during the last phase of life. No specific therapy is excluded from consideration. The test of palliative care lies in the agreement between the individual, physician(s), primary caregiver, and the hospice team that the expected outcome is relief from distressing symptoms, the easing of pain, and/or enhancing the quality of life. The decision to intervene with active palliative care is based on an ability to meet stated goals rather than affect the underlying disease. An individual’s needs must continue to be assessed and all treatment options explored and evaluated in the context of the individual’s values and symptoms. The individual’s choices and decisions regarding care are paramount and must be followed.

additional link for information on this subject:

http://www.getpalliativecare.org/rightforyou/

What Is Palliative Care?

Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms, pain, and stress of a serious illness—whatever the diagnosis. The goal is to improve quality of life for both the patient and the family.
Palliative care is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment.

Improves Quality of Life

Palliative care treats people suffering from serious and chronic illnesses such as cancer, cardiac disease such as congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), kidney failure, Alzheimer’s, Parkinson’s, Amyotrophic Lateral Sclerosis (ALS) and many more.
Palliative care focuses on symptoms such as pain, shortness of breath, fatigue, constipation, nausea, loss of appetite, difficulty sleeping and depression. It also helps you gain the strength to carry on with daily life. It improves your ability to tolerate medical treatments. And it helps you have more control over your care by improving communication so that you can better understand your choices for treatment.

A Partnership of Patient, Specialists and Family

Palliative care is a team approach to care. The core team includes doctor, nurse and social work palliative care specialists. Massage therapists, pharmacists, nutritionists, chaplains and others may also be part of the team.
The team spends as much time as necessary with you and your family. They become a partner with you, your family and your other doctors. They support you and your family every step of the way, not only by controlling your symptoms, but also by helping you to understand your treatment options and goals. Working together with your primary doctor, the palliative care team provides:
  1. Close communication
  2. Expert management of pain and other symptoms
  3. Help navigating the healthcare system
  4. Guidance with difficult and complex treatment choices
  5. Emotional and spiritual support for you and your family

Talking to Your Doctor

If you or a loved one has been diagnosed with a serious illness, you may benefit from palliative care. Speak to your doctor and ask for it. Bring the handout with you,  since not all doctors are familiar with palliative care and its many benefits.
***************************************************************************

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including
  • Pain
  • Shortness of breath
  • Fatigue
  • Constipation
  • Nausea
  • Loss of appetite
  • Problems with sleep
It can also help you deal with the side effects of the medical treatments you're receiving.
Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.
NIH: National Institute of Nursing Research
***************************************************************************

BROCHURE>>>>

http://www.ninr.nih.gov/sites/www.ninr.nih.gov/files/palliative-care-brochure.pdf

Yesterday was one of the better days I have had for quite sometime 

I had appointments at Ohio State Medical Center to be fitted for a Permobil Power Wheel Chair 
and
met with my Speech Therapist to discuss AAC <> Augmentative and Alternative Communication (AAC)

THEN! 
Brent took me to the Great Cuts salon near to home where I had my first out of home hair cut in a number of years (Brent usually trims/cuts my hair).
My hair was just past shoulder length and is quite thick.
The last several times I shampooed it in the shower....it took way more effort than it should have....to the extent I had to call my  husband to the shower to give me some assistance this last time for the first time.  I had breathing issues as well as balance problems and became tired  too much and too quickly.  That made for an unpleasant experience.


Will get into more detail about all this separately a little later.

Monday, November 4, 2013

part 1 COMMUNICATION AAG <> Augmentative and alternative communication

I own a Kindle tablet.  I also own a Nook (Barnes & Noble).  They both have their positives as well as negatives as to their functions.

At the time these were purchased,,,,,ALS was not in my vocabulary.  I purchased them for pleasure first as I like to read, play some games (Angry Birds and Bejeweled etc.) and also for work/reference....
never, suspecting that I may be using one or both for survival.

What am I referring to?

COMMUNICATION

AAG  <>   

Augmentative and alternative communication


OK, I am getting ahead of myself with the Kindle and Nook.........

for the moment, please look at the following article to get into the definition a little bit more, so that I can then move into the info about the Kindle and Nook...................

click on and go to the following link:




NeuRx™ RA/4 Diaphragm Pacing System

Last week, when I went to my appointment with Dr. Sanderson at OWU we discussed many things and this was just one of them>>>
I may be a candidate for this....

PLEASE read>>>

https://mail-attachment.googleusercontent.com/attachment/u/0/?ui=2&ik=e4835d1ec9&view=att&th=14223aa500fa1323&attid=0.1&disp=inline&safe=1&zw&saduie=AG9B_P-NkpwTwLMhEbc0ysYZitC0&sadet=1383579320062&sads=IDPYyNXWDRhzDE-MFUKCqtuFsGg

NeuRx™ RA/4 Diaphragm Pacing System:
Product technical manual must be reviewed
prior to use for detailed disclosure.
INTENDED USE
The NeuRx™ RA/4 is intended for use in
patients with stable, high spinal cord injuries
with stimulatable diaphragms, but who lack
control of their diaphragms. The device is
indicated to allow the patients to breathe
without the assistance of a mechanical ventilator
for at least 4 continuous hours a day. For use
only in patients 18 years of age or older.
The day I returned from my last visit at Cleveland Clinic 

I found these on the kitchen island from my son Andrew>


:)


Thursday, October 31, 2013

While it is getting more difficult to eat.......which results in increased weakness/lethargy......breathing issues etc.  .....................

I have been TRYING to get enough calories into my body to ..... survive.
Never in my life did I think it would ever come to this!
I am, what I classify as a 'foodie' who loves food.....
but, not anymore.

So, one of the strategies is to consume more liquid nourishment.

I had been relying on Carnation Instant Breakfast that I mix up myself.
It is good, and I posted about it already.

Lately, I have been drinking ENSURE....mostly the clear version of Blueberry Pomegranate in the bottle to get away form all the milky type shakes for awhile.  I like the Blueberry Pomegranate.

This week, the Strawberry  Ensure Muscle Health Shake is taking top billing. Premixed in the bottle.

http://ensure.com/products/ensure-muscle-health-shakes


Nutrition Facts
Serv. Size 1 bottle
(8 fl oz)
Calories 250
Calories from Fat 70
Amount Per Serving
%DV§
Amount Per Serving
%DV§
12%
8g
Fat
5%
1g
Saturated Fat

0g
Trans Fat

4g
Polyunsaturated Fat

2.5g
Monounsaturated Fat
2%
5mg
Cholesterol
10%
240mg
Sodium
24%
840mg
Potassium
11%
32g
Carbohydrate
0%
0g
Dietary Fiber

23g
Sugars
26%
13g
Protein
25%
Magnesium
Ingredients [–]
Water, Sugar, Corn Maltodextrin, Sodium Caseinate, Milk Protein Concentrate, Soy Oil, Soy Protein Isolate, Corn Oil, Potassium Citrate, Calcium Beta-Hydroxy-Beta-Methylbutyrate, Canola Oil. Less than 0.5% of the Following: Whey Protein Concentrate, Magnesium Phosphate, Natural & Artificial Flavor, Cellulose Gel, Soy Lecithin, Sodium Phosphate, Potassium Phosphate, Potassium Chloride, Choline Chloride, Ascorbic Acid, Calcium Carbonate, Cellulose Gum, Carrageenan, Ferrous Sulfate, Salt, dl-Alpha-Tocopheryl Acetate, Gellan Gum, Zinc Sulfate, Niacinamide, Calcium Pantothenate, Manganese Sulfate, Cupric Sulfate, FD&C Red #3, Vitamin A Palmitate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Folic Acid, Chromium Chloride, Biotin, Sodium Molybdate, Sodium Selenate, Potassium Iodide, Phylloquinone, Cyanocobalamin, and Vitamin D3.
Contains milk and soy ingredients.;  Contains Milk Ingredients;  Contains Soy Ingredients;  Gluten-Free;  Halal;  Kosher Dairy;  Low-Residue;  Not for patients with galactosemia;  Suitable for Lactose Intolerance; 
Vitamins and Minerals [–]
Vitamin A  • Calcium • Vitamin D • Vitamin K • Riboflavin • Vitamin B6 • Vitamin B12 • Pantothenic Acid • Iodine • Zinc • Copper • Chromium • Chloride • Vitamin C • Iron • Vitamin E • Thiamin • Niacin • Folate • Biotin • Phosphorus • Selenium • Manganese • Molybdenum • Choline