SLEEP NUMBER ADJUSTABLE BED..............

Does anyone OWN & SLEEP ON a SLEEP NUMBER 

BED???? 

More specifically <> the ADJUSTABLE style ???
What is your review of it?

I slept on a non-adjustable style in the Memorial Hospital Sleep Lab (Union Co. O.) and thought that

 I liked it....my mind was not too focused on the bed itself at the time, strangely enough.

 I think it was on getting the Sleep Study over with and going home etc.

It would be a huge inve$tment for us, so want some input.

Thinking about getting one to help with the ALS/Lou Gehrig's issues I have...that will only
be getting worse as time goes by.

At the moment, our standard bed was raised at the head of the be by about 6.5 inches to help with my breathing issues, specifically at this time.

That, makes the bed higher all along...and more difficult to get in or out of.

I still have to use a variety of pillows to get 'situated' comfortably....

All this is affected by the on going use of the BiPap unit (most nights dependent upon the nasal congestion issues.)

The Cervical Collar.

FYI>>>>

Here is a photo^> of the CERVICAL COLLAR that I purchased yesterday under the advice of my Physical Therapist "Matt" at the Cleveland Clinic this past week.

No, that is NOT me in the photo. It shows the box that the collar was packaged in.

Technical Info:

• 2394 Soft Foam CERVICAL COLLAR
• OTC Professional Orthopaidic
• a Truform OTC Brand
• division of SAI, Cincinnati, OH  45209
• Universal Size NARROW (various specialty sizes available)
• comes with removable sock-like material cover plus an extra cover
• Hand washable
• cost at my locally owned pharmacy > $10.49

I most likely will graduate up  to  a metal frame type neck/chin/head support somewhere in the future...

But, for the time being, the lightweight relatively inexpensive foam cervical collar was recommended.

One of the questions that I was asked at my Clinic appointment was IF I was having issues with "head drop"...

I kind of hesitated in giving an answer...

as, I hate to admit to the increasing physical issues I am developing.  There have been times, especially as I tire towards the end of the day, I do have difficulty in staying awake AND that includes a lot of almost nodding off...or "head drop". I am able to control the 'drop' without too much problem when I am not tired. My husband notices it when we are driving in the car. 

And, so, I connected it to just being sleepy....but, after some thought, I realized that for the past year, as I sat at the computer such as now...that my neck and shoulder muscles are gradually weakening

I find that my head/neck frequently are shifting forwards...aka dropping.  I try to correct my seating position....only to catch myself in the forward head drop position once again.

Making it a point to wear this while working around the house and in particular to wear it while sitting at the computer seems to be a good plan.

• This #2394 Collar is soft yet firm enough to give support.
• It is economical especially for temporary use.
• Allows for substantially easy movement.
• Can help to relieve some pain.
• Has a 'hook and loop' closure for easy on and off and adjustment.

*>  BE SURE you consider the thickness or height of the collar. As, a salesperson advised me, be sure NOT to get one that is to high for my neck....(I have a short neck, and she must have noticed that:) ) 

Now for the negatives:

It says it can be worn while sleeping...I would be careful about that as you could end up over stressing muscles of the neck and shoulders...or worse.

...and, IF you have Obstructive Sleep Apnea as I do, wearing it while trying to sleep (laying down at least) could make for some BIG problems with breathing...

<SO, I SAY, do not wear while sleeping! >

I am a sweater...no not the knit kind...the kind that perspires quite easily.

Having a low level of the heat intolerance range, I am quickly affected when the temperature rises...(my most comfortable temp range is between 60-72').

I've had 'hot flashes' since I was in my teens....and, so, they were not confined to going through the part of my life during menopause etc. and, wearing things meant for keeping warm, is not always a good thing for me.

The FOAM, is something I am finding comfortably warm at the moment, but since it has barely made it about 55' yet this spring, I know that the discomfort of an insulating thing around my neck, is going to become unbearable soon enough.

I hope this FYI was/is helpful to you :)

KROGERs

http://webcsoh.alsa.org/site/PageServer?pagename=CSOH_7_Kroger_Rewards_Program

2013 National ALS Advocacy Day.....

Apparently, I had this for quite some time, at least a couple of years (2011) <>

Laryngopharyngeal Reflux (LPR)

...that was initially diagnosed as GERD or  gastroesophageal reflux disease
and THERE IS a difference....
read here>>
http://heartburn.about.com/od/gastrictractdisorders/a/whatis_LPR.htm?nl=1

It caused a lot of suffering in that besides the discomfort, it kept me socially reclusive.... caused by the symptoms you see in the list that follows:

Symptoms of Laryngopharyngeal Reflux are:

• Continual throat clearing
• Chronic throat irritation
• Chronic cough
• Hoarseness
• Excessive phlegm the throat
• Dysphagia (difficulty swallowing)
• Constant sensation of something in the throat
• Swallowed food comes back up
• Post nasal drainage
• Weak voice
• Cracking voice
• Blockage of the breathing passage
• Spasm of the larynx (voice box)
• Wheezing
• Heartburn
• Plus > choking
• 
  

I have suffered from everything on the list^^^...and it was not correctly 'discussed' until I went to the OSU Voice & Swallowing Clinic in 2012.  Prior to that, the ENT I went to at my local hospital....did not approach this problem...I left the office with news of a deviated septum (I'll get to that in  another post) and an 'unexplained' thick mucous in the throat....
and, even, the gastroenterologist  I saw later, did not 'see' the Larengopharyngeal Reflux either.....they went with the generic GERD.

Then, in the latter part of 2012, the Modified Barium Swallow tests, MRI and other initial exams was thought to show Paralyzed  Left Vocal Cord...that later I was told was wrong,,,,,that,,,,instead there is an issue with the lifting of the areas that control the voice box/larynx ....a neurological issue.............
It was THEN....that the  Laryngopharyngeal Reflux was named.

Originally, I was given a script for Prilosec and then at the beginning of this year, that was changed to Dexilent.  The Dexilent seems to be helping more than the Prilosec.

April 22, 2013

It is a beautiful sunny morning here in west-central OHIO :)

Here is an interesting article, that should interest most everyone.....


WHOA!!!!!!   :)

This subject crosses my mind every time I 'don' one of these gowns!
Which, has been more frequently as of late.

http://blogs.webmd.com/cancer/2013/04/why-cant-we-have-a-better-hospital-gown.html?ecd=wnl_day_042213&ctr=wnl-day-042213_promo_1&mb=

ENJOY!

My son Andrew brought me a  new friend last night ^^

A Beta.

No name yet.

He is sitting next to the laptop on the kitchen table. This is where I spend most of my laptop time as this is a  convenient location to work  on it throughout most of the day.  It has been a few years since I have had any Betas...the last one I think lived to the ripe old age of 3+ years.

Andrew, is the real tropical fish person in the house and has a 25(+?) gallon aquarium in his room that he has maintained for at least ten years.

It is 7:10 pm and the sun is still out :)  Turned out to be a pretty day in the 50's.

Wednesday  April 17, 2013

One of the many things that has been on my mind for quite, I say QUITE some time (several years to be quite honest)   is>>

de-cluttering...or.......more to the point>>>

Letting Goby Katina Z. Jones at 

http://www.netplaces.com/feng-shui-decluttering/clutter-above-clutter-below-attics-and-basements/letting-go.htm

It is bad enough that we spend our money on items that we don't use or wear. But rather than acknowledging our mistakes, we compound them by hanging on to these items, making space for them in our homes and psyches, and allowing them to weigh us down from above or pull us down from below. We need, instead, to be freeing ourselves from excess baggage so that we can make space in our lives for the new and the wonderful—for what we really need and truly will use. And we have to be firm in our resolve to clean and clear and actually dispose of or donate those items that haven't seen the light of day in ages and for a very good reason. As with relationships we have shed in the past, these things may look good in hindsight, but when you closely examine them without the rose-colored glasses, you see that, like those old relationships, the love of these things ended for very good reasons.

The junk in your attic and basement—and this does not refer to old family photos or other memorabilia of actual value to you financially or nostalgically, but the honest-to-goodnessjunk—needs to go, and the sooner the better. The best proof of this may be if you are reading this chapter, seeing yourself in it, and feeling guilty that you haven't done what you know you need to do. Think of this chapter as your affirmation—your emotional support in helping to give you the strength you will need, the courage of your convictions, in finally, for once and for all, tackling those piles of unused, unwanted things in your attic and basement and freeingyourself from them forever! This is your battle cry, your Declaration of Independence. Repeat the following, “I (your name) WILL dispose of the items in my basement and attic that I no longer use or have any intention of using ever again!” There. Feel better? Now, let's look at the problem in greater detail.  END OF ARTICLE

********************************************************************************

I have some difficulty in 'letting go' of stuff....

Having been married 43 years, we have accumulated a lot of our own 'stuff' and then inherited a good bit more from passing family members. Some of these things go back quite far...1700s as family heirlooms. Other things are some of what we obtained while living a number of years overseas.  

A lot of what we are  'about',  is connected to family and home....which is where we spend of lot of time doing hobbies and crafts, gardening, as well as maintaining our home where we spend that time with our children, my mother who resides with us and with our pets.

Both my husband and I as part of the aging process, have 'slowed down' with accomplishing some of our interests here at home and have been slow to admit that.  Each of us thinks the other has certain 'things' that can be ditched...either by selling, giving away or trashing,,,but that gets touchy....and tends to lead to hurt feelings when we disagree as to the items that need to be sorted out and dealt with.

and so it goes...

until my diagnoses that is several weeks ago.

Now, I look at things in somewhat a different sort of light, and I am sure my husband Brent does also.

Before, I sort of felt as though there was no time constraint of accomplishing something I really was not wanting to do. I would probably feel that way yet today, except I am WELL aware, I my physical changes....

Tasks I thought were simple to accomplish....are not nearly as easy now and I just simply get too tired too quickly to care a lot of the time.

I have realized, it is more important to me for the time being, to maintain control over decisions concerning my 'stuff'.....so I have decided it is time for me to become active in this endeavor of downsizing and de-cluttering aka letting go.

The reasons WHY, I think are already obvious to anyone who has an illness like ALS or another serious  illness.

Issues of choking can be a BIG issue for me....

http://firstaid.webmd.com/choking-treatment?ecd=wnl_day_042113&ctr=wnl-day-042113_hdln_3&mb=

Choking Treatment

Call 911 if:

• The person is choking.
• The person is unconscious.

For infants 12 months of age and younger, see Choking in Children.

While Waiting for 911

If the Person Is Conscious but Not Able to Breathe or Talk:

1. Give Back Blows

• Give up to 5 blows between the shoulder blades with the heel of your hand.

2. If Person Is Still Choking, Do Thrusts

If the person is not pregnant or obese, do abdominal thrusts:

• Stand behind the person and wrap your arms around the waist.
• Place your clenched fist just above the person’s navel. Grab your fist with your other hand.
• Quickly pull inward and upward.
• Continue cycles of 5 back blows and 5 abdominal thrusts until the object is coughed up or the person starts to breathe or cough.
• Take the object out of his mouth only if you can see it. Never do a finger sweep unless you can see the object in the person's mouth.

If the person is obese or pregnant, do high abdominal thrusts:

• Stand behind the person, wrap your arms them, and position your hands at the base of the breast bone.
• Quickly pull inward and upward.
• Repeat until the object is dislodged.

3. Give CPR, if Necessary

If the obstruction comes out, but the person is not breathing or if the person becomes unconscious:  

• For a child, start CPR for children.
• For an adult, start CPR for adults.  

4.Follow Up

When emergency medical personnel arrive, they will take over and may do CPR or take the person to the hospital, if needed.

Saturday  April 20th, 2013

Somewhat of a dreary day, which, means it is also somewhat of a sunny day...

Today, I turned 59 years old. Nothing planned. Neglected to get to the bank yesterday, so, not doing anything such as a birthday dinner at a favorite restaurant.   I usually get one birthday cake during the month of April, for the 3 of us here with birthdays this month, but I have not gotten that done yet.

I wish I could be a little more positive today. I am trying.

For some unexplained reason, my insides are 'sore' today.
I have been passing blood in my urine today (did this a couple weeks ago)...will have it checked when I go to the doctor next week.  I think it could be kidney stones........

QUESTION:
Do you think that  fibromyalgia/chronic fatigue syndrome and MS (Multiple Scerosis) IS indeed related to, a pre-cursor to,  or a mutation of eventual Amyotrophic Lateral Sclerosis???

WHY???  and what substantiates your thoughts on this???

some good sites with lots of info>>>>>
http://www.webmd.com/fibromyalgia/ss/slideshow-fibromyalgia-overview?ecd=wnl_day_041913&ctr=wnl-day-041913_ld-stry&mb=  and

http://chronicfatigue.about.com/

http://ms.about.com/?nl=1

http://neurology.about.com/od/ALS/Amyotrophic-Lateral-Sclerosis.htm

NO <> NOT my shoe closet.

I could only wish....;(

I have not worn high heels for decades. Not a problem...

This photo is here to relate to my ongoing project this week of sorting shoes and removing those that I can no longer wear due to the leg/ankle/foot brace that I am "supposed to wear most of the time".
I have to pull out the insole/liner from each left shoe, place the brace in it, then see how it wears with socks or not etc. which means strapping on the brace after both shoes are on, taking a walk around the house and making the decision of IF the shoes are keepers OR to be tossed OR donated....

HAPPY BIRTHDAY (62) to my husband Brent :)
hoping your day goes well  :)

Tuesday  April 16, 2013


Today, we will be inundated with news about the bombings that happened at the Boston Marathon yesterday.
I have not quite put my thoughts together concerning this....
I was worried that a cousin of mine was in Boston, but was relieved to read on facebook that she is  in Baltimore.  Thank God.  I hope that none of her extended family were there.  
When 911 happened, my sister-in-law was in NYC.....and, thank God, she was not among the dead or injured.

TERRORISM.  NOT a four letter word, BUT, one of the 'dirtiest' in the English language.
The persons responsible for this, will learn, that America will carry-on!  It will  make our resolve all the stronger as a nation. That is the positive.  We will endure.
The negative....I am not going there at this time.............

My heart aches for those who were there and died or were hurt....and to the families of those persons.

Please, take a moment to pray and reflect...

for the recovering victims of the terrorist attacks,
 and for the families of all who have been injured or killed 
as well as
all those who have been charged with protecting lives from further terrorism
 and
for the recovery workers and first-responders 

Sunday morning, April 14, 2013.

This is an aside, you might think, from the subject of the blog...
ALS/JournalLKC
BUT
au contraire!

My family and friends (the pets included) are, some of the most important things to me in life...always were, but that may not have been obvious over the years...as, I admit to taking them as well as so many other things in life too much for granted.
Like most people, I thought I had all the time in the world, to pay too much attention, to that....
that it was just another day in my life that I expected to be at least in-to until my  70's upwards into my 90's.  I would pay closer attention to those things when I was <older>. After-all, though my dad passed at age 62, his mother lived within two weeks of being 100 years old...and a LOT of my other family members have lived to be in their 80's and beyond.
AND  so, I include things like this as it is a part of me....a part of my life before ALS as well as with ALS.....
My, how being given a diagnoses of an incurable disease can change things!
So, I insert this here, today....

This is a photo portrait of my soon to be 18 year old son Andrew taken by his brother Ethan (28).
Andrew has been doing some senior photos for students in his graduating class this year...and, he is doing very well. Now, however, it is Andrew's turn to have the camera lens pointed in his direction....for his senior photos
My dad and uncle were photographers > both as career professionals and simply because they loved photography. I believe Andrew and his brother Ethan have the 'genes' from both their grandfather and uncle and can pursue photography either as a career link to other interests such as engineering, computer design OR, as a wonderful 'hobby' that will nicely accompany them both throughout life.
I am VERY proud of both my sons!
I believe they are finding a lot of common interests as they both grow older such as the photography and bike riding, hiking, art, techno/computer skills, gardening, local history, 'foodies', travel etc. that will continue to bring them closer together as brothers over the ensuing years...
I love you guys ♥

....one of the items that was shown to me when I went to the Occupational Therapist at CC this week, was a knife adapted for use by person like me who have difficulty cutting/slicing things....My husband and I noticed that it was stamped 'patent pending' on the blade....
I laughed, and said  I wonder what the native Alaskans think about this....
as they have been using this very same style of knife for years & years & years....!
from the following website:
"The Alaskan ULU (OO-loo) is an extremely versatile cutting tool crafted by the Native Alaskan people over five thousand years ago. The knife was primarily used by Eskimo women for skinning and cleaning fish and has played an important role in the survival of the Arctic people. Blades were originally made of polished slate and given a bone, ivory or wood handle. The handles were often inscribed with distinctive designs or markings exclusive to the maker of the knife."

This link is to such a knife.....by the Alaskans>>

http://www.ulu.com/

http://www.ulu.com/pages/History-of-the-Alaskan-Ulu.html

http://www.ulu.com/pages/Video.html

I remember as far back as 20+ years ago when the QVC shopping channel was selling a version of this on-air....as part of their Made in America bus tour days :)

GREAT for ALL COOKS....disabled OR not :)

Must do some shopping this week.

One of the areas I visited at the ALS Clinic in Cleveland this week was Physical Therapy where "Matt"  took assessment of my current physical condition and then advised me of things I should be doing as well as NOT doing. He discussed/showed me devices that would be helpful for me to have and to use now as well as in the future.
I had already been given a prescription for and fitted with what is called an Otto Bock WalkOn Brace for my left foot/ankle to assist in correcting the 'foot drop'. I have been having trouble with this for the past year+.
Foot drop happens sometimes, in the case of ALS, when the nerves that help to 'operate' movement in the nerves that control muscles in the foot, ankle and leg are affected and no longer work as they should.
I have it in the left foot/ankle/leg...the side of my body that so far has the predominant effects of the disease.
The dorsiflection  is affected in that, I cannot lift the foot upwards, the big toe and the two toes next to it 'drag' when I walk and I have limited movement of these toes and foot/ankle.
This causes the 'foot drop' when I walk or attempt to climb steps.  My toes turn under and catch on the floor surface  esp.when not wearing shoes, sometimes causing me to trip/stumble or even fall.  Just the catching of the toes can be quite painful. This can be an additional problem in trying to climb stairs, as it causes me to 'trip' as I step upwards when my foot/toes drop. Climbing is already a problem due to other muscle 'fatigue' and respiratory issues.
This particular brace, is made of carbon fiber and works as sort of a spring effect lifting my foot/ankle as I walk.  It is very lightweight though very strong.
Matt has suggested that I wear this most of the time....(well, not without shoes on & I MUST wear an insole OVER the device so as not to cut my foot w/the carbon fiber).
Which means I will have to go shoe shopping.
As, so far, I have been able to fit the prosthesis into one pair of shoes, my Ryka sport style walking shoes.  (I have high ^^ arches, so also wear an insert for that.)  Not particularly flattering in style, but what I wear most of the time WHEN I wear an enclosed back shoe. I otherwise tend to wear Birkenstocks or similar most of which are open in the back and I have not tried the brace in the other enclosed shoes that I have....
And now....
guess the negotiated > NEGOTIATED cost of this item.
$1227.71........
Our insurance DID pay the majority of the cost, as we have met the deductible for the year at this point (it has been an extremely costly year for us out-of-pocket).

 YES, the device helps...quite a bit!

I have lost that sort of pirate swagger I had developed...drunken pirate swagger.

I feel more stable on my feet.

So, as Martha Stewart would say, "This is a good thing!"

If, I could only find a sort of device to rid me of the voice of the drunken pirate!!!  I now know what the reference to those persons who 'appeared' to be inebriated are all about....
and that, they are not drunk at all....just poor souls who have some sort of neurological issue so that they sound that way (& look that way).
And, I understand those persons'  frustrations trying to speak and make themselves understood....and hence...
some of them become so frustrated they not only sound like the drunken sailor but speak the language laced with a few obscenities thrown in.  THOSE are the words the listener understands for some reason.

OK
Today, I will be spending time on the 'net' - Amazon, looking for a head-drop neck collar brace....
Matt said to start out with a foam style and, eventually I will be graduated to a metal brace to hold my chin up off my chest......I tried one out at the clinic.  Perhaps by the time I need one, I can get it in colors or patterns like the newer walking canes I see at the drugstores....Pink paisley would be nice. I think I would skip the ones in the peace-symbol-psychedelic color...

weather report:  LOTS of rain and windy and the temperature high was in the upper 50's

Today...is the day I began taking 1 each  Ritulek tablet  twice a day....one in the early morning around 5:30 a.m  and the second timed to take at about  6:30 p.m..  The morning dose has to be had 1 hour prior to eating in the morning and the evening dose, 2-3 hours after eating....
It is quite a balancing act  to get those in at the correct time with the other prescriptions I still take PLUS the regimen of  vitamin supplements the neuro doctor  has added to my list.
It has gotten annoyingly difficult to swallow some of the larger size pills as it causes choking.  Some I am able to split.  I will look into the possibility of crushing some,,,that I am allowed to crush. Some, I may be able to add to applesauce to help in swallowing.
In my case, I have had quite a problem (worse some times than others), with dysphagia...chewing, swallowing, choking and talking issues (dysarthria).  This led to aspiration pneumonia last Novemeber.
Then, later I was told I had a parylized left vocal cord.  Later, that was revised to having an issue of not being able to have coordination in the lifting of the voice box etc. during the swallowing phase in combination with natural breathing function that would take the natural sequence for first preference.  This is due to the death of the nerves that control that function.  It will probably eventually lead to having a tracheotomy for breathing, and a PEG ....feeding tube, inserted in my stomach to be sure I can get proper nutrition when eating by mouth becomes too difficult.  THOUGH, I will be able at times, to still consume food by mouth  even with the PEG intact.

I found this interesting....

       http://www.youtube.com/watch?v=hp-gCvW8PRY

3-D Diaphragm and breathing....

I returned home last night from my overnight trip to Cleveland Clinic (Tues./Wed.) - get back to that later.

A rainy day so far this morning as most of you in Ohio know. 
Things are not going too well this morning.
I rec'd a call early from my mom.... with news that she is having health issues this morning...she thinks kidney related.
We finally got through to her doctor to find he is on vacation this week.
I am having speech troubles today, more than usual -- of course,,,,,so going through several methods to take care of the issue at hand.
I let my son drive to school today, so that in itself is a problem at the moment.
Working this out via my husband who is at work, so waiting for him to get back with me.
I am sure it will resolve itself soon enough.

Mom turned 86 on Monday of this week.
I am not sure WHO is under more stress....
ME, worrying about her and her problems and how I am going to deal with it as well as my own health & other issues...
or HER, with her health and other 'elder' issues & her worrying about me with my health issues.

This Saturday is a program/breakfast at the First Pres. Church here in Marysville that I had already told my husband and son that WE ALL need to go TOGETHER.
Karen Boerger a Caregiver Advocate and author will be speaking about "The Heart of Caregiving...The Emotional and Spiritual Side".   http://www.karenboerger.com/

I will let you know IF we attend or not, and our impression.

Good morning....

http://www.youtube.com/watch?v=_SKyfGK9brs

Thank you for viewing.

This is before things got crazy and way out of hand. This was when the participants did it for the love of the game and for the fans....before $$ became THE reason for the game.

Tuesday April 9, 2013

Good morning!  I turned the furnace off 2 days ago, and it is STILL off.  How nice. Spring may finally have arrived :)
Must get ready this morning for the trip to Cleveland Clinic later today.  We will be going early enough to have dinner with some friends this evening.  My actual appointment is not until tomorrow, but, it is at 7:45 a.m. and being that it is about a 3+ hour drive from home we are going up today and spending the night to avoid the time crunch as well as morning rush hour in Cleveland.
This is a 'clinic' at The Clinic at the Mellen Center building on the 'main campus'.  It is where persons with Multiple Sclerosis and other lesser known neurological diseases go for treatment and information.  People like me, who have ALS, have many of the same issues with other neuro patients so we are a part of this group.

The ALS Clinic is available and recommended for patients and their families/caregivers to not only educate them in the needs and changes that will be forthcoming in their lives, but I think, also for a sort of comfort zone of human interaction....

< Building

"U" , The Mellen Clinic in the lower right corner is my destination this time.

The first visit to CC in February was in building "C" in the left side of the map. Then about two weeks ago, I was at building "S" in the center area of the map for my official "2nd Opinion" tests and diagnoses.

WHAT A PLACE !!!!

I started taking Rilutek 4 days ago...:)  The refills go through 04/02/14....so, hopefully that is a good sign that I will be able to still function at  that point let alone still be here.
There is no cure for ALS....only this one medication that has been approved for use...in hopes of extending life a few more months at most...
per WebMD >

"This medication is used to treat a certain type of nerve disease called amyotrophic lateral sclerosis (ALS, also commonly called Lou Gehrig's disease). Riluzole helps to slow down the worsening of this disease and prolong survival. However, it is not a cure for ALS, and it does not reverse nerve damage or muscle weakness. Riluzole is thought to work by protecting the nerves in the brain and spinal cord from too much of a natural substance called glutamate that may be part of the cause of nerve damage."

"How to use Rilutek Oral"

"Take this medication by mouth, usually every 12 hours on an empty stomach, at least 1 hour before or 2 hours after a meal or as directed by your doctor."

I am only taking 1 per day until next week, then, I begin 1 tab two times a day as above^

So far, the worst part of this med. IS I take about 8 other prescribed meds/vitamin supplements and they all have particular times for consumption...and, one is for GERD/larynesophegeal silent relfux.  That requires me to take them an hour + before bedtime, or I have issues as a result of laying down to sleep.  It is really a juggling act :)

...and so,  :) (smile) WHAT IF, I were unknowingly taking part in a 'clinical trial' and was actually taking a 'placebo' rather than the Rilutek ?   At $50 a month for the one prescription O-O-P,   I know my dh would be more than a little p=o'd.

Monday April 8, 2-14

First,
 HAPPY 86th BIRTHDAY to my MOM > Joanne Apple  :)  I love you !  Thank you for being there for me.

There, now on to my new blog.

This blog is entitled> ALS/JournalLKC because I needed a place to share my life information with others concerning my recent diagnoses of ALS (amyotrophic lateral sclerosis) more commonly known as Lou Gehrig's Disease.
I could do so via facebook, but, I prefer to have a separate location that I can be more in depth concerning my personal issues that I am facing with this disease.   I hope, that, somehow it will be a positive therapy venue for a negative situation....for me as well as others who read my writings...  In particular, my family and friends AND others who have this disease and/or their caregivers.

I should have began this venture several months ago, probably when I first had that instinctive feeling that  'something more was wrong with me than the diagnoses of diabetic neuropathy  that neurologist "A" told me I had...'   
That, was in approximately October of 2012. 

ME>>>>>

August (?) 2012 age 58

As you might guess from the photo, I was pretty active in the home & family venue.  That is just a small sampling of our canning.  It has always been a family affair, starting in the garden and ending up in the pantry for on the dining table along foods we would dry/dehydrate and occasionally freeze.

As for me, I pick this interest up from my mother who gardened and grandmother Maude Cryder who  did that as well as canned. My husband from his grandfather who gardened and mother/grandmother who canned.  Not only do we get great food, but a sense of pride and self worth that we pass along to the next generation :)