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Wednesday, November 15, 2017

Easy Pivot Disk

 The Easy Pivot Disk

This device was recommended to us by a fellow ALSer and was a fundamental part of our daily lives.

https://www.youtube.com/watch?v=I5LQH6I963I

This piece of equipment allowed us to be independent, travel, keep our dignity and some privacy because it allowed me to be the sole caregiver for Tracy on a daily basis.
With this disk I was able to get Tracy out of bed, in his chair, to the bathroom, in and out of the shower, in and out of the pool, to the doctors, on a cruise ship and in and out of the hospital when 98% of the people around me told me it was impossible.

Now here's the secret to using it.

 The trick is to not use your strength.  It's about leverage.
Quite honestly this video isn't the best but it does give you a good idea of how it works and it IS very easy to use basically.
 I saw people constantly trying to PICK UP their loved one which led them to having to TOSS them into their chair or on the bed because of lack of balance and lack of strength.
This is where so many injuries happen for both caregiver and ALSer.

When they can help you~
If your PAL has some strength in their legs but can't move their feet well, you can start by placing your foot between their feet on the disk.  I squat to their level and ask for a hug (meaning they lean towards me). The natural hug position has a nice Pavlov reaction and the person generally naturally turns their head to lay on your shoulder.  Their chest comes to yours so the weight is moved to YOUR core, not your back as when you are reaching (which is when problems arise).  Once you pull their hips over their ankles, if they have any strength they can either stand or you can pivot as is and there is less distance to move them to sit.  The advantage to this position is that you have the power to TWIST the disk with the foot that is ON it and because of the weight you know it's not going to slide anywhere. 

About the gait belt that you should use with every lift..... Imagine a guilty sheepish look on my face....

Do as I say- not as I do.... sooo.....I'd love to come up with a really good sound reason why we didn't use the gait belt but....mmmm....the truth is Tracy didn't like it, it was uncomfortable, I was lazy, it wasn't convenient or handy....no good reason.

I looped my elbows under his armpits and grabbed his shirt mostly.  Later on I hugged him tight to me and grabbed my own arms.
You should wear a back brace as often as is practical or comfortable as well.  They really do help.
If you go down...your PAL does too.

When you do all the work~
The trick to getting someone who has no strength left in their legs up on their feet to turn them on the disk is to lock their knees out with yours.
For this technique the difference is that I placed both my feet outside his ( his feet that are both on the disk) with my left foot on the handle of the disk so it didn't slide and my knees against his knees.  This allows you to lock out the knees as you stand.  Again I would squat and hug him to me and ask him for a dance. (The dance refers to the small rocking steps to create the turn).  His head would lay on my shoulder, being careful to not strain his neck.  It became uncomfortable for Tracy to turn his head too far sometimes so his chin would rest on my shoulder on those days.  Just be careful not to choke them or stretch the neck too far.
I like to use several small steps instead of just a big swing turn so I always felt I had control over his weight.  It's about balance.  As their weight goes back to the chair your weight counter balances by squatting and sticking your hind end out.  You don't want to have the feeling of toppling on top of them as they sit.  Use your Legs not your back.

Rant Warning:
It's incredible to me that NO ONE in the medical field has any interest in using this disk to transfer people. Not the hospitals, doctors offices or clinics.   When I insisted I could move my husband at the ALS clinic (especially when I saw how many others were "helped") they seemed truly surprised and nervous that I was confident about moving him on my own.  You will hear me criticize a lot of things about our journey but I will admit the people at our clinic really did CARE and were concerned about me moving him or dropping him and they also showed great concern for me and my health.
They did seem impressed at how smoothly it all went when I moved him safely and quickly. Impressed or not no one ever followed thru with getting one for clinic that I know of. (Yes, Tracy.  I hear ya, preposition at the end of the sentence....)

I was irritatingly vocal (according to Tracy) about the fact THEY SHOULD have some. The nodded and smiled and never did get any, nor did the ER we visited way too many times. 

WHY???  You would think the insurance companies would PAY to have every nursing home and hospital have them just to save on lawsuits from people being dropped or mishandled. 
The way they tossed Tracy around in the ER was criminal and I threatened more than one of them if they dared to think about moving him after seeing their complete lack of knowledge or caring.
(Even the really really big guys recognized THAT look of a person pushed to the edge and they believed me and rarely challenged me after that.  I highly recommend you use your determination to protect your loved ones if you get the sense staff is in any way incompetent.  I found that happened shockingly often). 

If you read this and do have an actual understanding of how the system works and why they are not open to recommending this disk I really do want to hear your opinions.
It must have to do with how bids for insurance coverage go.  How do they decide what is covered and what is not and by which companies?

I would have loved to have this Disk presented as an equipment option FIRST before they talked about Hoyer Lifts, wheelchairs and breathing machines.  How do we make that happen?






Believe it or not

Believe it or not

 So today's post is about belief which to me ties directly into hope which to me ties directly to your chances of surviving any chronic disease diagnosis
To me this is at the core of one of the biggest problems of the  Healing ALS journey.
From the moment you are diagnosed you are told repeatedly- 
There is NO HOPE.
As a certified hypnotist I will tell you that having a highly respected person of authority make a shocking statement that is emotionally charged and plays on your worst fears and then repeating - there is NO HOPE over and over again is Hypnosis 101 in the most harmful way.  
It's the basic formula for any brainwashing recipe and it is used in cults commonly. 
Look it up.  
Don't BELIEVE anything I say.  
Look it all up yourself and make sure you are finding what YOU believe to be true and not just taking what you hear or see as fact.  
If you have NO HOPE then you will not try to heal. How can you achieve a goal you are not trying to reach?
 Doctors make sure they do not give you False Hope for they fear they could be sued.  
Doctors do NOT want to be sued.

The term false hope seems to be an oxymoron.  
You either have hope=the feeling that what is wanted can be had or that events will turn out for the best or you don't.
False hope means what you believe to be achievable is in direct opposition to another person's opinion that many times they believe to be fact.  They BELIEVE there is no hope.  They say it is a FACT.
This brings the question to light-what is a FACT?
Fact-(according to 3 different dictionary sources) a thing that is known or proved to be true, something that actually exists; reality; truth. a statement that is true or can be proved with evidence.
In these definitions -WHO is doing the proving? What is their motivation?  What evidence are they willing to consider or not consider?  
My definition of fact is information some believe to be true at this moment.  Because let's face it, there are people still debating if the Earth is flat or whether we really went to the moon.  We thought Bill Cosby was a good guy and that blood letting and leaches were a good avenue to treat disease.
Facts change all the time with the amount of knowledge and information we are exposed to and have time to consider.  Facts clearly are also often manipulated for political or financial gain.  
(That's another whole ball of wax.)

Known as Gus-isms, my father has many wonderful words of wisdom that make us ponder.  
There are still some I don't have a clue what they mean but this one I have found to be very true.

Just because you don't understand me doesn't make me wrong.
Event, item of information, or state of affairs existing, observed, or known to have happened, and which is confirmed or validated to such an extent that it is considered 'reality.'

Read more: http://www.businessdictionary.com/definition/fact.html

Event, item of information, or state of affairs existing, observed, or known to have happened, and which is confirmed or validated to such an extent that it is considered 'reality.'

Read more: http://www.businessdictionary.com/definition/fact.html


Event, item of information, or state of affairs existing, observed, or known to have happened, and which is confirmed or validated to such an extent that it is considered 'reality.'

Read more: http://www.businessdictionary.com/definition/fact.html
So- in general, doctors say to those who are looking for options for healing ALS that it's Impossible.
When you have experienced the Impossible (being diagnosed with ALS having never been sick in your life until that point, as one example) in my experience, anything then becomes possible.
Below are a couple links to the Impossible being done on a daily basis.
Tracy and I have worked with both these men directly. They do EXACTLY what they say and show they can do.  It's shocking.  It's life altering.  
It changes your perception of reality.
We are told these things are IMPOSSIBLE and yet- we experienced the impossible ourselves on more than one occasion.  We spoke to many others with documented serious and life threatening illnesses who were healed after western medicine had failed and given up on them.  This includes animals as well as humans taking the Placebo Effect out of the equation for me.
You can debate HOW you BELIEVE it's being done or you might want to consider the answers those who are doing it give. But it IS happening.
How does choosing to believe or not believe impact your life?
What consequence or judgement would you have to deal with if you chose to believe?

Open your mind to new possibilities and enjoy!!!

 Fun with Master Zhou-
This wonderful little 83 year old dynamo was absolutely incredible and I look forward to going back and visiting him again some day.
He created movement and strength in Tracy's legs that was not there before.  After being wheelchair bound for many months Tracy was able to stand for a short time and even took 4 steps with help and then backwards 4 steps.  Tracy had a frozen shoulder issue Master Zhou loosened. 
I have videos that show a bit of Master working with Tracy. I'll try to figure out how to load them on here.  (Talk about a miracle!!)  
 Without context it's really hard to understand how much movement he gained while Master worked on him.
He tells you to say HOT if things get too intense.  I can not express clearly enough how HOT things get.  I mean red hot poker hot.  His energy starts out warm and then you hear the sizzle on the foil and you think, I'm ok, I'm ok....then it quickly becomes clear you are absolutely going to say HOT so he will move the towel and have him quit waving his hand over you for a second.
 We spoke with many he had healed who volunteer to help him now.
There are many videos on You Tube of him going back many years- Universities have studied him (which was actually one of the reasons I chose to give him a chance) as well as being on TV shows.

http://www.masterzhou.com/
 In this first video start at about 35 minutes to see Master Zhou at work.  This is the same room, in the same building, working with the same staff as when we were there.

I just like this one so I'm including it.
This is fun- Stan Lee's Super Human's
I like Stan's last statement at the end of this video.

You can find all sorts of fun videos of Zhou from That's Incredible and Ripley's Believe it or not...
Look around.  I think it helps unbrainwash you when you see so many situations Master Zhou is in where people are looking to discount what he does as a hoax and can't.
Talk about Miracles!!!
If you knew Tracy or his blog at all then you know he was not a big fan of organized religion.
It was a sign of how much he loved me to agree to skype and then eventually meet and have appointments with Dr. Nemeh.
Dr Nemeh is a real medical doctor who just happens to also be able to do what he considers religious healings.   He gave us great sound medical advice that helped us so much.
Now, I know how nuts this is going to sound but I am gonna tell the truth anyway.

I saw in my research that this guy has an incredible success rate during his healing services.  Being a hypnotist I thought- perhaps power of suggestion as much as power of prayer (which I do absolutely believe in as well- again another whole ball of blog post).  
Over skype he improved Tracy's panic and anxiety that was keeping either of us from having any kind of quality of life at that time.  He improved Tracy's swallowing which had become a very dire situation.  Tracy's choking and gasping improved greatly after the very first meeting.  He gave us so much good sound, practical, HEALTH information that helped.
On other visits there was always some kind of improvement but the bottom line was- Tracy really liked him.  He liked and respected this man who was so so different from him.  
Dr. Nemeh is a quiet, gentle man.
I took Tracy to a religious healing service (talk about suffering for Tracy!!!  He was praying that lightning bolt would come down and save him right then and there).  What was REALLY surprising is that I am the one who got a healing!!
They prayed over Tracy.  I thought they were done and then they moved to me.  Now remember there is a whole church full of people with REAL problems hoping for healing so of course I felt instantly guilty (yep, Cathoic up bringing).  I had not told ANYONE.  NO ONE that my back was out because I was Tracy's full time caregiver.  I had in the past tried to get help in a couple times when I had back problems before and it was always a disaster.  More work for me- they couldn't do what I needed them to and I was out $75.  So, it had been a long day on that pew waiting for our turn but who was I to complain when Tracy was sitting right there. (Perspective on suffering).  They do their thing, a hand on the front and back of me, gently praying then POP!!!  I feel it in my back.  Dr. quietly says mmmhhhmmm....then moves on.
At this point I am just stunned.  We go back to our place on the pew and I test and test and test my back.  I twist and turn.  Nothing.  No problem.  I think- power of suggestion (logical, skeptical me).  I think in a few minutes it could wear off.  Then I think- what am I doing!?  I am looking a gift God in the mouth!  I am grateful and thankful.
Now this is still HILARIOUS to me.  
Dr. Nemeh is a very quiet respectful gentle guy.
We go down the line waiting our turn to thank him as we leave the church.
When I get to him I am still flabbergasted!  
I tell him he healed my back!! I am all animated and shocked.  He looks me straight in the eye and with a "look" of DUH he says I KNOW,  and with that gentle smile says what do you think I am doing up there all day! ahahahahahahahahaaa.a..a  
It was soooo out of character for him.  But he takes what he does as a matter of course.  
Yes, Miracles Happen.  
(It's the name of his book).
Dr. Issam Nemeh-
http://drnemeh.com/
https://video.search.yahoo.com/yhs/search;_ylt=AwrDQykqjAhaOT0Ahcc0nIlQ;_ylu=X3oDMTBncGdyMzQ0BHNlYwNzZWFyY2gEdnRpZAM-;_ylc=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?gprid=s8Cr_wCdSTyRafNHlLcuKA&pvid=JM58yzEwLjFQuLGCVWagQQM2MjYwMgAAAADsxxqG&p=dr+issam+nemeh+faith+healer&ei=UTF-8&fr2=p%3As%2Cv%3Av%2Cm%3Asa&fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk#id=2&vid=826c2db67296c39350359f30b906aa91&action=view


Who do you believe?  
The doctors with zero successes? 
Or the healers with many many documented successes?


Tuesday, November 7, 2017

The Healer

 I apologize ahead of time because I am posting this in typical Tracy fashion.
I have not warned friends or family about what I am about to post and it's likely to make people uncomfortable.  
Perhaps it's because I am truly being inspired by my dear dead husband and I don't want anyone to stop me so I will do it now and ask forgiveness (or not) later.

Perhaps this post is prompted by the fact I am experiencing plague like symptoms 
(ok, I just have a cold but it feels really bad) 
and am feeling momentarily that there is a very small chance I could actually meet my demise and I would not like to leave this planet without sharing what could be helpful to those in the deep dark trenches of the madness called ALS diagnosis-
 which is a totally different subject than 
HAVING ALS.  
(To be discussed in another post).

(Yes, I have taken medicine at the prompting of concerned friends and family and this is most likely why I am suddenly spewing my opinions like confetti at a kids party.  Remember that people, the next time you insist I should take drugs to get over my illness.  
It's called Side Effects!! 
Now you get to share them too. )

It's been 2 years since Tracy left the planet, 
Oct. 27th of this year, 2017
 and in some ways it seems like just days ago and in others it seems like he's been gone an eternity.
I had great expectations of helping heal Tracy and then sharing what we learned with the world.
That didn't work out as I had planned.
Plan B is to gather what is left of me and prove to the world that there IS hope and there ARE things those diagnosed with ALS can do to improve their quality of life and perhaps lengthen it and even slow or stop symptoms, and yes, in some rare occasions even reverse them.
I am passionate about this because of our experiences, so I KNOW it's real and true and that there are over 25 other people that I know of, that HAVE ALREADY 
healed themselves, to varying degrees, meaning living a longer, happy productive life, being able to walk and talk and work.

The old Amy would have blazed a trail immediately, knocking doctors ass end over tea kettle and shouting from the roof tops until someone finally listened.

As the Much OLDER Amy, I have chosen to not do that (yet) because of the whole- you are just a distraught, bitter,  soon to be widow, in denial of the truth, speech I was given repeatedly throughout our experiences dealing with the ALS medical community. 
And the HealingALS.org people who politely, calmly conveyed their opinions, that if I want to bang my head against that brick wall that is my right to do so but all I will get is a headache.

But- now is the time!  
I figure I have held my tongue for 2 years and that should be about as long as anyone needs to, to prove to people, 
(who probably aren't going to listen anyway), 
that my opinions (or facts) are not driven by emotions alone but by experience, knowledge, education and investigation. 


I post this link above because the questions Charlie Goldsmith, Energy Healer, is asking and the frustrations he voices are exactly what I ran into trying to convince ANY REAL doctor dealing with Tracy to listen to what I had to say when it comes to anything remotely close to discussions of health or healing those diagnosed with ALS.

This young man is on a quest to try to get any medical persons to be willing to investigate what he is doing to heal people. He has pages and pages of testimonials and now has an impressive little TV pilot. 

 He was astounded to find out that NO ONE in the medical world is interested.
 He was told by a medical doctor no one will ever fund research for that.  
It doesn't matter if it's true or not. 

That is what I have found to be true with ALS as well.
It doesn't matter what I am telling them because if I am right- it does NOT HELP THEM at all if they are selling drugs and what we need is HEALTHY LIVING concepts.


This very harsh reality is still one of the hardest things for me to deal with in our 4 1/2 year journey down the ALS wormhole and the subsequent 2 years.

It is the opinion, as I understand it, that the HealingALS.org people ( the group that has over 25 long term survivors compared to the medical world's Millions of dollars and ZERO successes) are going to set about helping those people lucky enough to find them, smart enough to understand what they are saying, energetic enough to be able to follow thru, financially sound enough to afford healthy living concepts and with enough family support to ward off those who are trying to save them from their sure delusions.  They believe eventually there will be enough proof that what they are doing is working because their numbers will grow to the point that the PUBLIC will figure out the truth.
 That being- the medical world is the one very misinformed and misleading many who can be helped, at least in some ways. The public will make the change happen and the medical world will be forced to jump on board.  
And I believe that they are right.  
But how long will that take and how many more people will needlessly suffer and die while we wait for the world to become unbrainwashed?

I am absolutely 100% in support of everything HealingALS.org 
is doing and the wonderful, generous, amazingly dedicated people who work every single day to help those who are suffering this diagnosis and disease.

But- I am impatient.  I am warn out.  
I suffer every day knowing that there are people, just like Tracy and I, who are being given extremely harmful, dangerous and just plain wrong information by the medical world and no one is holding them accountable.  
I am told repeatedly- it's not the doctors fault. They are just doing what they are told. How could they possibly go against their peers?  
What real proof do I have anyway?

What proof does anyone need really?  
What would change YOUR mind?  
What would change YOUR actions?

This is not a rhetorical question.  This is a real, honest, passionate cry to any of you who are reading this post to share it and to give me a response. 

Now is the time.