Wednesday, September 23, 2020

The Damn Blue Mitts- Frozen hand syndrome- hand ataxia

 For those suffering through the painful cramping and lack of movement that leave hands balled into a fist here is something that helped us.

Always, always talk to your doctor FIRST, before you make any changes.   But, we were often, very often, met with a complete dismissive attitude and comments like- this is part of the journey....

First ask if there is any nutritional issue that might cause your hands to lock down, like low calcium or magnesium or dehydration.  Ask if there is ANY benefit to the mind or body by having this happen. Then let them know you will be actively pursuing ways to change the situation.  When they roll their eyes at you, please, please- resist the urge to slap them upside the head but you ARE ALLOWED to mention that you see their lack of enthusiasm and confidence and remind them you are still alive and so you will be making efforts to improve your quality of life even if they have given up on you.  (Too harsh?....well...maybe....but when I got to watch them eat their words it made up for a lot of bad behavior on their part and it kept them from being so dismissive the next time we chose to solve a problem they had no answers for).  

A reminder:  Just because THEY (whoever is telling you "it's impossible") do not have the answers you are looking for does not mean there is no answers.  It means THEY do NOT have the answer.  Keep looking.  

I know we were not typical people or journey so I will share my experience knowing it's not for everyone...but it worked for us so I am sharing it.

My husband's hands started curling up to the point his nails were digging into his palms. We got the "Damn blue mitts" and while yes...technically, they did their job, they restricted any movement he did have left and they annoyed the crap out of him. Also they slow down circulation.

I did research to see if there was ANY benefit to his hands curling up. WHY would the body and mind choose to do this. I could find no positive reason to allow this. Always ask the doctor before you make changes but my experience is they just tell you that is the way it is and is part of the journey. NOT TRUE for all!!! If it's not true for all then there is a REASON it does NOT have to happen for you (My opinion). First of all look up videos for acupuncture and acupressure. There is a spot between the thumb joint and index finger that if you massage or press on that spot it will help release the hand if it's been locked down. Look for videos on You Tube.

I am a hypnotist so after a short while (a week or so) I took the mitts off and threw them across the room and emphatically stated YOU DON'T NEED THOSE! My husband LOVED a massage of any kind any time any where (and I mean that in all manners and meanings). This was the 2nd positive reinforcement. While I massaged his hands (with coconut oil but you can used Essential oils if you would like but make sure you know the correct ones and what to mix them with) I told him I researched and that this is a mistake by the mind and body as it's trying to adjust what is going on with all the changes. I repeated that it makes no sense "does it" (subconscious implication to answer in his head to agree with me) that if he is losing strength his grip should loosen not tighten. (Even if this is not the truth of the actual situation the subconscious is listening). I continue to massage because that keeps his conscious mind busy enjoying the feeling of touch as I continue with great confidence and said -LOOK it's working already. His hand of course WILL be looser because you have been working with it. The body follows what the mind tells it to do. If you give it NO instructions then it will follow whatever preset is in there. He is Motivated to have this work even if he doesn't consciously believe it's going to work because the body and mind naturally want to move away from pain. If this works then he gets continued massages. Another reinforcement.

His hand relaxed dramatically after the first session and continue to relax more and more and within a week or so it was comfortable and no longer balled up. As often as I could I would pick up a hand and massage it, flex it, stretch it and repeat that it feels better doesn't it? Yes. Good. Then ASK them- How does it feel to you? Hopefully you will get a nod if you can or an eye brow quirk. Repeat often. Point to the GOOD, the improvements. Make them PROUD of their success.

Circulation plays such a big big part in the health for all. The more you move any part of the body in any way the better we found. So many issues have to do with Immobility- not necessarily "ALS" as such. Doctors tend to lump it all together but it's NOT. Scalp massages also help over all quality of life and are often over looked. How many times a day do you touch your face and hair???? I hope this helps. I would love to hear back from anyone who tries this or something similar . I am always looking to learn. Good luck.

Saturday, September 12, 2020

Meet the Success Stories they don't tell you about

 We would love for you to join our meeting if you are interested in hearing about how others are navigating their ALS journey successfully. Sundays Speaker is a long term survivor and is sharing what she has learned. There will be an interactive question and answer time after the meeting.

To learn more go to HealingALS.org.
How to Heal ALS
📷
Sunday Sept 13, 2020
12PM PT, 3PM ET, 9PM Europe
Evy McDonald, MSN, Diag ALS 1980
ALS Reversal, Another Perspective on ALS
Register in advance for this meeting:
https://us02web.zoom.us/meeting/register/tZIvfuqqqT0tHt3GMsE4XB6HUUbAC6KBtWHu
Please share on Facebook, Twitter, Instagram
If you cannot get in, just re-register at HealingALS.org

Friday, August 28, 2020

Healing ALS is possible but not easy

 For those of you who are big Tracy Blog fans I am sad to say he has not, as of yet, come back to the planet.  But I find myself compelled to speak to those who landed here looking for some help and some home, some pearl of wisdom that is going to help you thru the nightmare of ALS Diagnosis.

Yes- the DIAGNOSIS is deadly.  The disease is a challenge.  The Diagnosis is what, in my view, is the big nail in the coffin so many are racing to throw those diagnosed into.

During our ALS journey I researched ever moment I could to find anyone who had survived ALS long term and hoped to find the miracles along the way of those who have actually healed.

Well- Better late than never!!!

https://healingals.org/

THERE IS HOPE.  People are healing.  

Don't believe me!! Seriously- Don't believe Anything anyone says.  Do your own research.  Contact these people and actually talk to live people who are just like you.  Same diagnosis.  

It's not easy or quick or simple.  There is no magic pill.  But it is POSSIBLE to heal because I am talking to a group of those who have survived ALS long term or are in the process of reversing symptoms or have reversed symptoms.  I know, I know- You are thinking-if this was true the doctors would have told you about it.  NOPE.  Doctors will tell you what they were taught to tell you.  How do you think they ALL say the exact same thing no matter who you are or what stage you present your case to them?

I'm just saying- What do you have to lose to look?

I know what you have to lose if you don't.

Check out https://healingals.org/


Wednesday, June 6, 2018

Healingals.com


It's been a long 2 years 7 months and 17 days since Tracy, my husband of 38 years, left the planet.
I have given myself what feels like multiple lifetimes since then to heal, grow, recover and change.

What I can tell ya is 
ALS STILL SUCKS.

 For those who were hoping (myself included)  I could leave "that life" behind and start anew, I am so truly sorry to say, that is not happening.
I am happy for all who have been and are able to manage that monumental feat.

The idea that my "bad attitude" about the roller coaster of our journey might some how soften as I move past the daily grind of caregiving (which I would go back to in a split second if it meant my pain in the ass husband would be planet bound again) in fact seems to have taken, what to me seems like a predictable turn in the opposite direction, as I have never been wishy nor washy when it comes to attitudes or decisions. 

As I regain what little strength I have (which quite frankly is disappointingly little) I am immediately drawn to those who helped Tracy and me throughout our entire ordeal and continue to do so in so many surprising ways.  

Just so you know, I appreciate all of your creative kindnesses every single day still. Every family member, friend and stranger who took the time to hit the like button on a post, send stamps, paper goods, bad jokes- all of it, helped so much.
  Never, ever hesitate to do what most consider those "little things" because it's those hundreds of moments that made/make such a difference in our quality of life in meaningful tangible ways.  

At the forefront of that list are the (once upon a time) strangers that have dedicated themselves to helping the hopeless over come the tsunami of depressing, irritating misinformation that was heaped upon us from the second of our diagnosis. Yes, those amazing, tenacious, generous souls at HealingALS.com.

What makes them so special?  How are they any different from the hundreds of other ALS organizations?

Because they have given their own private time and money to help us and asked for NOTHING in return.
I found them as I searched the world for those who had accomplished what I had hoped to.  They talked me thru horrific situations, educated me, mailed us packages of supplies out of their OWN POCKETS.  They even came to our home to SHOW us they were REAL.  Real, Live People who care about us because they WERE US, Are US.  

They were diagnosed with ALS, JUST LIKE US.  They were told the Exact same things, I mean word for word, about how hopeless their situation was and how they should give up and get their affairs in order because they were doing to DIE in short order and there wasn't ANYTHING anyone could do about it and anyone who said different were charlatans out to scam you out of your money.  

And yet- here they stood, in front of us, on the phone with us, writing letters, mailing supplements and equipment, emailing, sharing, praying- whatever it took to snap us out of the brainwashing we had endured.  

Since Tracy's passing I have revisited much of our journey to see the REAL truth from a different perspective.  Was I in denial?  Was I just in shock? Was it wishful thinking to believe there MUST be a way around this terrible fate?
The answer is yes, yes and yes!  Yes- I absolutely deny that the situation is hopeless!!  Yes, I am STILL in shock that the world has not discovered the TRUTH.   And YES, I believe that it's that exact wishful thinking that is going to keep us marching forward to share the truth that ALS symptoms CAN be slowed, stopped and even reversed because I am TALKING to the people who are doing it right now!!!  

So, what this means is I am absolutely dedicated to helping those who have survived ALS get the word out to as many people as I possibly can, as fast as I possibly can, because every day counts.

So please, please help me.  Help us.  
Help spread the word about HealingALS.com.
The life you save may some day be your own.
Go to HealingALS.com- like, share, post, donate.

 





Sunday, November 12, 2017

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?



Sunday, October 30, 2016

Come on over

Since I am now me and not technically we and Tracy has an amazing blog with many followers I am choosing to keep him alive through his blog site instead of mine.
The goal of my blog was to discuss and share the practical sides of caregiving for ALSers but the truth is I was so busy DOING that I didn't get around to SHARING.

So-I am going to muck up Tracy's blog that he loved so dearly in hopes that it makes him crazy enough on the other side to come back and continue to write:)

Thanks for following along.
Hope this can help.
Me

Saturday, February 13, 2016

Valentine's Day

I am truly happy for all you who will enjoy 
Valentine's Day to the fullest.

I have been asked in many ways if being around happy couples makes me sadder.

On the contrary-
Happy people make me happy.  I have no interest in sitting with sad people who have lost what I have or more, trying to one up each other.  I do however sympathize and empathize greatly with those in the trenches of forced change and I do so enjoy the freedom of the "insiders chat" we can freely share.  Knowing people really understand does give some stability to the roller coaster I am experiencing.

I am not pretending life is a bed of roses without thorns.

There is nothing you can say or do to make me SADDER so quit worrying.  Say what is on your mind.  Ask whatever questions you want.  Give that advice you dared not -"too soon".
Bringing Tracy's name up makes me know you miss him too and in some ways it keeps him alive.  But also realize- don't feel OBLIGATED to wallow in that remembering if it makes YOU sad because then you will avoid talking to me and that WILL make me sad.

Clearly I am no expert on much of anything and as many have pointed out over the last few years I am not necessarily middle of the road on my views.  As a matter of fact many can't even SEE my view (point) standing right next to me.  I'm fine with that.
I write this because I hope that it can help anyone in anyway- including myself and it's my gift to Tracy because he Sooooo LOVED to pour his heart out to you all.

This holiday is another in the line of firsts without- and again it has taken me by surprise that this Hallmark Holiday is actually tougher than any so far, even Tracy's birthday.  Most people just give a card and a kiss or go to dinner, maybe some flowers.  It's not a month long international celebration with movie stars promoting their wares.  

What it is for me, is a time to reflect on those nearest and dearest to me and why they are.  THIS has been a very difficult holiday for me because there are no distractions.  Nothing else to focus on BUT that reality.  

We were lucky enough to have a crazy love affair that started in high school and surely will never end. 

But even in my sadness, automatically I think of all of you who showed your love in so many amazing ways to both of us.  That really does help.  And I thank you all and I love you all for being so giving and sharing with that very special gift.

~So Really~
Happy Valentine's Day