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.

Whirlwind

It's the day after Halloween.

The Wizard of Oz is a perfect visual depiction of our life- post Tracy.  

A whirlwind of activities and emotions buffet me unexpectedly and expectedly.

So many many many things to think, do, organize, plan while the mantra "there is nothing you HAVE to do" plays like a broken record off loved ones lips and in my mind.

The emotional roller coaster has been slowed by an avalanche of activity.

Some are happy distractions in the form of pampering by family and friends that I have to admit I am greedily enjoying.  Other activities include facing the hard realities and responsibilities in the aftermath of this mandatory life change.  Some are busy work to just keep moving to make sure I still can.

To wash the acid like burning sense of ALS out of my mind I raced to have Respiratory pick up the cough assist machine, Trilogy Tri Pap breathing machine, Humidifier and suction machine- most of which we barely used if at all. To me they felt more like they were sucking the life out of him even tho I know they are designed to do the opposite.  I am so glad to be rid of them.

Today I packed up his clothes and personal items except for those we will craft into clever gifts and memorabilia, reminding myself over and over that those items are not HIM.

But he is here in spirit.

We know this because he went with us to Trick or Treat with the grandkids last night.

We took his wheelchair, lights on

and talked to him and showed him the bounty

the boys collected.

Neighbors awkwardly hugged me

wondering if I had indeed gone over the edge due to the emotional trauma.

I almost felt bad for our distasteful inappropriate display.  Almost....but not quite,

because I know Tracy would have loved making people squirm.

It was so wrong it was right.

This is from Linda Keegan Paulhus who is creating a healing center for ALS.

 I am cheating again.

There is just not enough time in the day to get to everything and write about it at this point.

I have come in contact with Linda Keegan Paulhus who is a wonderful enthusiastic powerhouse of a person who is committed to seeing those with ALS have the opportunity to heal.

She lost her son to this disease and has studied about it for many years.

This is her advice to those diagnosed with ALS.

LUTIMAX-Has the highest concentration of lineolic acid [sublingual].  of any product developed.  I was in constant communication with Tom Lahey, developer [deceased a couple of years ago].  He used his personal money to develop this product [google Lutimax as the company still makes it available].  There was an TV interview in Los Angeles with ALS patients who were speech impaired.  Within 15 minutes, speech was regained.  An L.A. firefighter with ALS went to M.D.A. and spoke with Jerry Lewis who said he would accept it for clinical trials.  Like everything else where drug companies cannot profit, it was swept under the rug.

 

There is no magic bullet.  Lutimax helps nourish maintain the brain, henceforth,  improves speech.  It is an exceptional aid.

 

URGENT:

 

It has taken 14 years to prove what causes ALS      A    dvanced     L   iver       S    ymptoms

 

Every symptom, muscle deterioration, anemia, fatigue, digestive problems, fasciculations, inability to eliminate waste from the body, malabsorption,  etc.   ---are all symptoms of stage 4 liver disease.  Very simple:  Research malabsorption and/or pernicious anemia caused by liver disease.

 

CAUSES: DIET [gluten causes liver blockage; Recent Hepatic Infarction], statin drugs; [Northwest U. 2006, statin drugs are a probable cause of ALS], multiple medications.

 

Why are they missing this??   The blood panel used to detect liver disease can be up to 65% inaccurate.  If the blood panel does not reveal a problem, doctors will not order a Sonogram of the liver [visual picture].

 

FIRST STEP:

 

Schilling Test-Measures the absorption of B12

LIVER SONOGRAM-100% of ALS patients tested had some level of liver disease.  If not treated, the condition graduates to non-alcoholic cirrhosis, anemia, then, pernicious anemia.

C-Reactive Protein Test

Homocysteine levels.  www.labtestsonline.org  

Epstein Barr Virus-HHV-6    60% of M.S. patients have been dx'd with EBV [from tainted polio shots; mother's are carriers]

www.ccid.org     Dr.Martin 

 

DO NOT OVERLOAD YOURSELF RESEARCHING NEUROTOXINS.   The metals, bacteria, etc. cannot be eliminated from the body until the liver is functioning.  At that point, an oral chelator and minerals are used.  IV chelation is too abrupt.

 

LIVER TREATMENT:   Researched medical archives.   Doctors Minot and Whipple won a Nobel Prize for the restoration of the liver.

 

MYER'S COCKTAIL:  Developed by Dr. Myer's, this is a nutritional IV drip designated for malabsorption.  It also contains glutathione.   You cannot produce blood cells without B12.  B 12 shots are life sustaining.  [need both immediately]

 

CHECK FOR DEHYDRATION AND ELECTROLYTE imbalance.  Due to liver blockage, one may consume an adequate amount of fluids that are unable to be transported through the fiber net in the liver. 

 

HORMONE IMBALANCE may be present, especially in women with ALS.  The liver produces and balances the hormones.  A toxic liver creates severe imbalances, more so with women.  They tend to become highly emotional and are unable to retain information.  Men, on the average, tend to follow through with recommendations as the emotional status is not as compromised. 

 

I need a tech person [age related lack of skills] as I am not set up for Skype and have no clue.  If you can, try to comment on ALSTDI.   Millions of dollars have been raised for ALS patients and many would like it to be used with a focus----evidentiary proof and treatment.  No one seems to ask the patients how THEIR money will be spent.

 

FORWARDING MY COMMENTS TO SOME ALS PATIENTS AND CARETAKERS.  They will contact you by choice depending on health status and caretaker ability.   

 

Take care and keep asking questions,

Linda

 

ALL OF THE MEDICAL INFORMATION AVAILABLE I.E.  SOD 1, Bulbar, pathogens,  etc.   are just secondary conditions caused by liver disease and the inability to absorb nutrients and fluids, and/or, the inability to eliminate toxins. 

 

 

Feeding Tube

Sorry I have been lax on the posts lately.  There are so many things I want to share so others who are on this journey too won't have to figure everything out from scratch too.

I am posting to say that Tracy is going in on June 18th for Feeding Tube Placement.

We are both bummed that it's come to this but I do have a different perspective too.

I see that I can get him water and nutrition.  I believe that dehydration could be part of his gut issue.

I think if I can get his gut healed he will be able to absorb nutrition better.

From what I have studied gut issues with ALS are common.

Where my first instinct and second and maybe more, was to blame drugs for doing the damage, we had several doctors mention that the gut is the second (sometimes first) brain and crazy nerve disorders send messages that effect the gut. Think how people's stomach hurt when they are worried or tired or upset.

We will be doing more hypnosis ( you hear that honey?) and I will look forward to giving him more coconut oil and water and then start sneaking in some extra nutrition so see what he can make happen.

Tracy also started in the Trilogy machine which he has had forever and couldn't use.  Dr. Viroslav insists he get used to it and changed some setting to make sure he could.

Sorry this is short and incomplete but the boss is calling.  Something is better than nothing!

Right?