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.

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

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/

Healingals.com

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.

 

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.

https://video.search.yahoo.com/yhs/search?fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk&p=youtube+master+zhou+healing#id=4&vid=3f92f68b1866f0ac079488f231a4e19a&action=view 

I just like this one so I'm including it.

https://www.youtube.com/watch?v=66oxwbFEEys 

This is fun- Stan Lee's Super Human's

https://video.search.yahoo.com/yhs/search?fr=yhs-adk-adk_sbnt&hsimp=yhs-adk_sbnt&hspart=adk&p=youtube+master+zhou+healing#id=12&vid=9a8708ee73496d3b678c351af9af8eac&action=view

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?

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

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

New Year

I can't quite get myself to say HAPPY with New Year yet.

I am so thankful to all of you who have helped me through this journey and for those of you who continue to support me in so many amazing ways.

I have spent time with the grand boys and my kids.  I have started a very part time job that is an absolute miracle in fit and focus.  I have been given time and freedom and security to heal.  I have been included into the local community with open arms.

But this is all the PollyAmy stuff.

The easy stuff.

 It's not the gritty truths that Tracy was so fond of sharing and you all were so brave in receiving.

I really had expected to  continue Tracy's blog with a bold diligence and consistency.  It's not that I have forgotten.  It's that it's a lot harder than I thought to just pour out what I am thinking or feeling without regard to others.  It's not others opinions of my writing that is my issue.  It's the thought that I may hurt or upset others.  Our truths are not pleasant ones in many cases.  What is the balance that justifies this risk?

There are so many really unpleasant facts of our journey that I haven't shared because that is not my nature.  But if I could save anyone from any of the unnecessary suffering we went through I feel it's worth it and yet....I find myself not writing.

I get called or emailed from a variety of people with health issues and I have no problem sharing exuberantly the "truths" of our situation with them directly because I know there is no emotional shrapnel to have to consider. 

I still get correspondence from people who share how helpful and inspiring Tracy's writings were and are to them.   THIS is why I am interested in continuing to put myself in the trenches instead of leaving ALS far behind.  In my search to find the TRUTH about ALS and healing I had so many helpful people who gave us information, guidance, encouragement and hope.  This allowed us to LIVE each day instead of counting the days until we died.  THIS is Soooo important for the world to understand.

So many people have encouraged me to write our story.

They have provided beautiful journals and have provided information and connections.

If I can't write a blog post how would I ever get the courage to write a book?

People keep telling me to focus on myself.  Don't worry about others at this point in my life they say.

Helping others IS helping myself I think loudly to myself.  This feels healing to me. 

So much to consider.

The journey continues.

Thanks for listening.

T'is the Season

Merry Christmas to ALL!  All who have helped me get through the last few years and the last few months.
I am so lucky to have so many friends and such a loving family.
I really do love you all.

Kiss noise,
ME

T'is the Season

Happy Holiday Y'all!

Well, happy-ish.  We made it through the "first" holiday after Tracy decided to go see what's on the other side.  (Yes, he did come back for a quick visit to say I was right, which I knew, because why would I argue for something I knew was wrong, right?  But that's another post).

This post is prompted by the support groups that contact me to make sure I am doing okay which is nice but so far I have not found personally helpful yet due to their focus I think.  Maybe I am in the same denial that the medical world kept trying to "encourage" out of me since the day of our diagnosis of ALS.

I want to thank all the wonderful people who HAVE been so extremely loving, sharing and helpful to Tracy and I all through our journey.  Even those and sometimes especially those who did not necessarily agree with Tracy or I in our view points but were willing to listen, argue and /or stir the pot with us.  It ALL helped and showed us how committed you were and are to allowing us to live the best life we can no matter what the circumstances.

Thanksgiving

We had our ups and downs and sidewayses.  There were tears and hugs but also laughter and stories and typical merriment that Tracy would have loved and some he would have avoided like the plague. 

We made a plan together to be prepared to be 

HAPPY on Thanksgiving Day.  

We discussed that we all miss Tracy.  That is going to be true for me for a very long time I "imagine", but that Thanksgiving is one of Tracy's very favorite holidays because cooking and eating is the major focus of that holiday that brings people together and he did sooooooo love to show off his culinary skills, so let's not waste it.

Rachel did a fantastic job channeling her father in the kitchen and did him proud all the way around with the help of Nick and Paige and friends.  Sarah, Tim and the Kiddos went to El Dorado AR to be with their other family so we could all get to be together for Christmas.

We made the choice to grieve before and after in whatever ways we need to but ON THANKSGIVING DAY, a day specifically to be remembered and passed down thru our heritage, we would focus on all the GOOD about the day.  

And you know what- it worked!!!

I have to admit- the days leading up to Thanksgiving were surprisingly emotional for me.  I think part of that for me is that I am also trying to figure out where I am going physically and financially as well as emotionally.  But Thanksgiving Day was a wonderful celebration with the kids and new friends and calls from the family around the country.  Again I am going to say- there were moments of sadness that we admitted to and waded thru but the day I feel will be remembered with a smile.  It was a GOOD DAY.

The idea that so many, including the support groups,  point out repeatedly, is that you most likely will be sad and miserable and lonely at the holidays, with the thought that somehow being prepared for it will make you "feel better" or not as bad, makes no sense to me. But then I am reminded often, I am not typical in the way I view the world.  Is it just me?  What is the goal of that mindset?  Is it to make you less miserable (which means you need to be miserable to have this thought process be successful).  Are they making sure you KNOW that you are supposed to be miserable in case you didn't get the memo?  Is it to make you feel included in that Group of Grievers?

As a hypnotist- you know you do NOT point to that which you Don't want.  Telling people what NOT to do does not create a path for what you want them TO focus on.  To say, "watch my hand.  I am going to slap you in the forehead.  Watch for it....watch for it.....THERE" SMACK!  Now, did seeing it coming stop the sting or did it still hurt??   Wouldn't it make more sense to say- there is a lot of slapping going on out there.  If you prefer to get out of the way of the majority of the slapping step to the hugging and happiness section.  It may not get you out of the way completely but a nice hug sure takes the sting out of a thoughtless slap because you are watering the event down with more than one emotion (not completely eliminating an emotion).  And if you aren't standing in the misery it's a lot easier to avoid getting hit with it as often. It's about your focus.  Hap or Piness.... Put the stress on the wrong syllable and you get a WHOLE different meaning:)

It is a common form of emotional support and therapy to discuss "look for these signs of sadness and depression and recognize it as such.  Yes, you want people to understand that it is NORMAL to feel grief but to then DO the things that increase misery instead of relieve it seems to me to be counter productive.   Now since I am not the brightest bulb in the pack I am willing to explore that which I don't understand.  I have considered this "kindness" they keep calling and offering to me is actually the best way to do things as I am new to the whole grieving widow thing.  The saying that Misery Loves Company rolls to the front of my brain.   No one wants to be alone.  It feels great to have a connection with others especially under stressful situations knowing they understand. But do you really want to sit around with other miserable people when you are sad?  Does that REALLY make you feel better?

I have a very dear friend who shockingly lost her husband in a freak spontaneous way at the same time Tracy passed so she is dealing with some of what I IMAGINE I am.  I am grieving her loss too.  I have no idea what she is really going thru because just as I have learned in health and healing- every situation has so many variables, that there is no exact recipe to go by.  Would I feel better if her husband was dancing around laughing WITH her physically on this planet right now.  OF COURSE I would!  So, no. My misery does not want any darn company in that arena.  Her being miserable in NO WAY makes me feel any better.  It's not a competition.  No one has it any better or worse.  The the world of Suckdom- all things are equal.

I have found comfort in her correspondence, kindness and love.  It's not so much what she says specifically but that she is taking the time during her own grief to think of me.  The message that we are there for each other is the comfort.  We are not alone- even tho we at times feel very alone,  not being with who we want to be with.  Yes, it's good to share and relate to each other.  But neither of us wallows in the sadness trying to invite the other in that quicksand.  We remind each other-it's one step at a time with the focus being-some how we are going to make it thru this and when we doubt it the other is there to lift us both up, not commiserate on how awful things are.  Together and separately we will find a way to be happy again,  just in a new way. 

I don't need any reminder at any time that I am or was or might be sad and miserable as if I might forget or miss it if they don't call and mention it to me.  The idea that people are going to prepare you for what you are about to go through so you are not shocked may have some value but there are two sides to that coin.  

1).  There is NO WAY to be prepared to lose a loved one really.  It hurts no matter what.  

2). To tell someone over and over again by many sources and some authority figures that you ARE going to be miserable and sad, especially when you are emotional-MAKES THEM MISERABLE AND SAD.  

That is how hypnosis works.  I have been studying it with great fascination for 25 years.  I can tell you from personal experience I have NEVER felt better or relieved in any way when someone told Tracy and I to be prepared for something awful that you can not stop.  Do you have to be practical and prepared for things? Maybe.  But if that is the ONLY thing being talked about and focused on you are pointing them to the path of depression. 

Have you ever been feeling pretty good and someone comes along and asks what's wrong or if you are sick or not feeling well?  What do you do?  You begin to search for WHY they would say that.  Then you begin to FEEL for it in your body.  Does something hurt?  You look in the mirror to see What about you LOOKS bad or sick.  All the focus is on relating to that which was pointed out. You now totally ignore the fact your skin looks good and your eyes are bright and your clothes fit well.

Now, it's important to understand that I am not saying Ignore your feelings.  ALL feelings are important.  That is why you have them.  I am pointing out that for some reason, that seems illogical to me, the majority of the world believes, it is some how comforting and healing to point out how miserable you probably are and that by reminding you of that and relating to that they know how you feel so you are not alone in your grief.  If I hit my finger with a hammer and you pick up a hammer and smash yours- MY FINGER STILL HURTS THE SAME.  I just have to worry about YOUR finger too now.  

Wouldn't it be a better plan to just ask questions- what do you need?  How can I help?

Tell the truth to them in positive ways- Are you getting more sleep?  You sure look well rested or Wow, you surprise me with how much you have accomplished lately.

My mindset is- If what you are doing does not make you happier or healthier in some way- why are you doing it?  Grieving in a healthy way is a way to get back to being healthier and happier.

I am not a therapist.  I am not an expert on anything.  I am a person wading through life just like everyone else.  For some reason, in many ways,  I don't experience life like others.  I don't understand things like others.  So I am sharing my experiences in hopes that others may learn from me and perhaps others may take the time to share with me what they believe  I am misunderstanding.

For those grieving or not- Expect to enjoy the holidays.  Create ways to enjoy the holidays.  Look forward to enjoying the holidays starting right this minute because NOW is the only REAL time you have.  Why waste it? 

T'is the Season to be Jolly- Fa-la-la-la- la....

 

 

LInking

 After taking an extraordinarily long time to write this post on Tracy's blog I am cheating again on my own by linking it risking the chance you won't be interested in it fast enough to click the link.

But I see you as an inquisitive bunch and have faith you will at least give it 2 or 3 seconds to decide.

http://als-whaticantellyou.blogspot.com/2015/11/im-not-bitter-i-am-flabbergasted.html

NOW is the time

Life is still overwhelming at this point.

The celebration for Tracy is Sunday.

Knowing that in a couple days things will change yet again and

we will be "post" first funeral technically

is a relief and depressing all at the same time.

And even with all that, my mind constantly circles back to all that we have learned through this journey that I really really want to share so no one else has to go through what we have.

My initial reason for starting this blog was to list in some organized fashion the practical side of dealing with the day to day details of living with ALS.  Tracy was very very good at expressing the emotional roller coaster of his journey.  But he never discussed how to scratch your nose if you have no hands or how to wash someone's hair that can't hold their head up.  I really want to share that.

I feel so strongly that if others diagnosed with ALS could START where we left off they will never have to deal with the harsh symptoms we did.  I hope that the depression that finally overwhelmed Tracy can be squelched by making each challenge easier to face and deal with and allow others to live longer, healthier, happier lives.

I can't wait to get started- so I won't which leads to our Mantra.

The Mantra we (me, I ) adopted because of our ALS journey is-

NOW IS THE TIME.  

Whatever it is- do it NOW.  Now is the only real time. The past is just a memory. The future is just your imaginings.  NOW is the only time that is REAL. 

Tracy had an ALS habit of postponing things, avoiding things, ignoring things that were difficult, unpleasant or scary.

ALS is a STRESS based disease.  FEAR is a driving force in ALL symptoms of ALS.

Fear you say?  Not ME!  I am strong, fit, independent! I am the provider and protector!   HIDING from that fear creates a physical and emotional stress in the mind and body that aggravates the nervous system exacerbating symptoms.  

Why do you think they call it the Nice Guy's Disease?  Because ALSers are known to work through pain and not complain. They love to be over achievers and play it off like it's nothing.

Before you dismiss what I am saying consider this.  WHY would there be a personality associated with this disease?  Even doctors admit there is.  They even admit that MS and Parkinson's also has it's own personality.   

How you have learned to deal with stress from a very very young age sets up the neurological patterns and path ways in your nervous system.  Understanding that when you change your habits and mindset you literally change your physiology and nervous system.

If you haven't read or listened to The Biology of Belief by Bruce Lipton and even better HIS presentation of that book you should.  It's incredibly insightful and helpful in understanding how to heal ALS as well as many other issues.

So- creating NEW habits changes your mind and body's reactions to events.  If you were one to silently stew about something or put off paying bills and put a smile on your face to get along, you may want to make changes NOW to improve your health quickly, easily and dramatically.  If what you are doing does not make you happier or healthier why do it?

It's tough you say- be happy when you are scared and uncomfortable and people keep pushing doom at you every day.  BUT....if STRESS is killing you, then the opposite of that can heal you.  So understanding that your subconscious is 24/7 reacting, listening, acting upon the constant input from your emotions and thoughts allows you to DO something to help yourself.  I'm not saying it's easy.  I am saying the concept is "simple".  Those who have healed themselves of ALS ALL- every one, have this same idea in common.  YOU MUST HAVE A POSITIVE ATTITUDE.  You can't pretend.  It doesn't matter what the public believes.  It matters what YOU actually FEEL. That is what your nervous system acts upon.  Not just what you think, but what you FEEL.  

You can decide if you are going to let yourself cry or not.  Tough guys don't cry we are taught. Cry or not- if you FEEL sad and FEEL like crying but you don't then that electrical charge is held within the body and nervous system.  It's why people go work out hard when they are stressed because they know they feel better when they do.  Being afraid of experiencing those feelings puts stress on your system.  To heal you need to relieve ALL STRESS of every kind.  

Begin NOW to heal yourself.  NOT LATER, NOT TOMORROW.  NOW.  If there is ANY hesitation in you at all about beginning to heal yourself NOW recognize THAT is ALS.

Please feel free to contact me if you have questions.