Fast Track

 This was sent to me by another gal in the trenches.  They are trying to fast track some drugs to help us.

 

 

Dear ALS patients and Caretakers,

We are in communication with FDA after our February meeting and we have filed formal request for Accelerated Approval Program. We are still waiting for the final result. It is illegal to access GM604 without FDA approval. Genervon cannot afford the compassionate or expanded access. Phase 3 trials are very restrictive in enrollment, with limited number of patients and 1/3 of patients are randomized to placebo treatment.  The best option for the dying ALS patients in our opinion is for FDA to grant accelerated approval with post marketing Phase 4 requirements, instead of waiting for Phase 3 results which will be too late for this generation of ALS patients. All ALS patients can have access legally now and the health insurance will pay for the treatment.  However FDA has the authority to decide and the chance of approval is small.

GM604 met the AA criteria of FDA ( http://youtu.be/fzlePvW-Dg4) with FVC as the surrogate end point. Clinical end point in forced vital capacity (FVC) is an indicator of clinical survival and disease progression. Most ALS deaths are due to a decline in pulmonary involvement function. There are statistically significant differences in the change and percentage change between the treated and placebo group from screening to week 12 for all patients in FVC. The fact that these p-values are significant with so few patients is remarkable. (see Statistical Report Addendum table 3, page 9 below)
This clinical data correlated very well in terms of achieving statistical significant between treated and placebo groups with the three important ALS biomarker data TDP43, SOD1 and Tau in the excerpt of a Asahi TV ALS Special showing a GM604 treated patient. Asahi TV has the copyright of the video and it gave Genervon the right to private showing and pass along but not allowed to be posted on the internet. Please honor our promise and if you cannot keep your promise not to post it on the internet please delete the link. ( https://drive.google.com/file/d/0B-0D7Rnc4pwbem8ybVJLNUxPQkE/view?usp=sharing). The issue of small trial has been dealt with by statistical expert:   http://www.genervon.com/genervon/images/data20150203.pdf  

Links below may answer some of your questions. Please read all links carefully to minimize repeat of asked and answered questions.

http://www.genervon.com/genervon/medicines_trialdata.php

http://www.genervon.com/genervon/about_pressreleases.php

    

Those who HAVE HEALED ALS

Meet Kim and Kay Cherry.

http://www.alswinners.com/

I learned about them researching those healing themselves of ALS.

These wonderful people actually CAME TO OUR HOME to PROOVE to us that they were REAL and that we can indeed heal ALS after I called them to find out what they were doing to heal.

Kim's diagnosis and following doctors advice matched ours exactly, almost word for word even though he had Bulbar ALS- effecting the breathing first, different symptoms and time of diagnosis.

This meeting was the first glimmer of hope I had seen in Tracy's eyes since being diagnosed

(but trust me Tracy is still FAR from convinced HE can heal because of the purposeful brainwashing at diagnosis and beyond).

I know what you are probably thinking, it's probably what we were thinking when we first started finding people who were healing ALS.

This can NOT be real!!  If we can really heal and what they are saying is true then why isn't everyone else doing it?  Why don't the doctors know about it?  Why is it not all over the news like the 100's of failed drug trials?

Kim actually went back to the doctors to show them he was healing and took the tests over again.

He was so excited to share his news so he could have the doctors give hope to others.  The doctors said they were sorry but- their diagnosis was the same as well as their timeline to his demise.

Time went by and Kim got even BETTER!  Again he subjected himself to the terribly painful tests in order to PROVE he WAS HEALING!!  He could barely walk or talk or get up a flight of stairs at his original diagnosis and now he is back to working, swimming, golfing, talking and STILL doctors REFUSE to accept he IS HEALING!

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

Here is a video showing a dozen or so other people who are healing ALS including Doctors and ND's helping them.

You will see Kim Cherry speaking on this video.

I would love for you all to Share Share Share this video!

When Tracy asked Dr. Heitzman, who is his neurologist and ALS specialist who sees thousands of diagnosed each year, he asked if the doctor has ever seen anyone who healed their ALS.  The doctor said- Sadly, No.  This man has worked 25 years doing research, trying to find a drug to help cure ALS and has NEVER known of anyone who has healed.  He speaks very highly of himself and his events and associates and boasts he is one of the TOP neurologists in the nation and beyond in the ALS research field.  And yet, he has NEVER known anyone who has healed.  Isn't that odd? 

I guess the man needs to get out of his office once in a while.

 

How was I, with very little sleep or education or time able to find so many who are healing and actually TALK to them while taking care of my husband 24/7, dismantling our home and lives because of our diagnosis, and he has not found even ONE in 25 years?

https://www.youtube.com/watch?v=Hh8k32VsxLA

I found this video very well done and I agree with what he says to do in order to heal ALS.

http://healingwithdrcraig.com/video-films-radio/dr-craig-osters-19-year-als-healing-journey-life-experience-vitae/

Dr. Craig Oster is very well known in ALS circles for being one of the early pioneers in healing ALS.

https://www.youtube.com/watch?v=q9G_FDwStl8

Go to 4:35 on this video to hear about reversing ALS with Coconut Oil

Oh- you want books on healing ALS instead by people who have healed- Okay.

http://thehealingcodebestseller.com/

I actually picked up the phone and called Dr. Ben Johnson and to my surprise HE ANSWERED!

He was very very nice and helpful and encouraging.

He was so thrilled with healing his ALS by using the Healing Codes he quit what he was doing to promote this technique.

Here is a bit of his story.

In 2003, Dr. Ben Johnson visited an orthopedic surgeon to discuss symptoms of fatigue and muscle spasms he had been experiencing for over a year.  The diagnosis was something he never expected…ALS (more commonly known as “Lou Gehrig’s Disease”).  He then went to another doctor for a second opinion, but the diagnosis was the same.

As a medical doctor, Ben knew his prognosis was grim.  Eighty percent of people with ALS die within 5 years of developing symptoms, and he had been experiencing symptoms for over a year.

Shortly after his diagnosis, Ben learned of Dr. Alex Loyd’s new work known as The Healing Codes.  Ben was intrigued by the amazing stories of healing being experienced by Dr. Loyd’s patients, so he decided to personally investigate the science and philosophy of The Healing Codes.  He came away convinced that there really was something remarkable in Dr. Loyd’s new work, and began practicing The Healing Codes himself.

After only three months of practicing The Healing Codes, Ben could tell that he was no longer experiencing the symptoms of ALS.  He returned to the surgeon who had first diagnosed him with ALS, and the tests showed that the disease was 100% gone.  Ben has remained symptom free for over 6 years now!

After personally experiencing the results of The Healing Codes techniques, Ben has traveled all over the world telling people about The Healing Codes.

http://www.ericiswinning.com/

This is kind of the ALS Healing Bible.

Eric Edney was one of the first I know of to publish a Healing book for ALS.

The website is very meat and potatoes on what to do to heal.

A LOT of information packed in there.

http://www.baar.com/atk_book.htm

David Atkinson

Not a literary masterpiece but he gets his point across.

Healers and Hospitals-

Dr. Isaam Nemeh

http://drnemeh.com/appointments.php

http://pathtofaith.com/

Very interesting intelligent medical doctor who also happens to be a man of great faith. His wife is equally as wonderful and extremely engaging, delightful and entertaining.  They are a team in many ways.

He doesn't really appreciate being called a faith healer because he is an actual medical doctor who has a medical practice.  Separate from that he does healing services.

He is well known for producing a surprising amount of miracle healings.

He told us he was working with 14 other ALSers who were doing well.

http://www.masterzhou.com/contact.html

Okay- whether you are sick or not, if you get the chance to have Master Zhou work on you it will change your life.  He does what we believe to be impossible so after that ANYTHING becomes possible!  He is another healer who is very confident anyone can heal from ALS (and just about anything else!)

 

Here is a natural remedy hospital in Poland that works with "incurable diseases" including ALS.

https://www.youtube.com/watch?v=sXwo7RY2Gvc 

Wish it was closer.  

How about products-

http://www.winningthefight.org/

This is the Deanna Protocol

Deanna was very nice and helpful when I called her too.

When she was diagnosed, her father who was a doctor gave up everything and spent several years coming up with a combination of supplements and practices to heal his daughter symptoms.

She has improved greatly and now they have started company to sell these products to help us.

They are run by volunteers for the most part.

When we were diagnosed their list of supplements was overwhelming.

Now they have developed a line of powders etc. to make it easier to understand and use.

Ben Fuchs- Pharmacist Ben-

This guy has been so incredibly helpful and has taken my phone calls every time I have asked for help.  Never charge me a penny.

http://pharmacistben.com/

When I am in doubt and struggling I talk to him and he is so absolutely positive that nutrition can heal us I can't help but be excited each time I get off the phone.

He is very emphatic that doctors often do not have a clue about health.

http://pharmacistben.com/category/youngevity/

These are the nutritional products he supports.

His advice has helped us get rid of Tracy's long on going stomach issues (from medicine we found out) and helped get us off Metformin and bring Tracy's blood sugar numbers down.

http://brightsideben.com/

This is his radio program where he discusses health ideas.

https://reliv.com/

Reliv has a Monday night conference phone call for ALSers to talk to those who are taking this product and healing ALS.  I was very forward about asking questions on these calls and the Up Line people were extremely helpful and sent me all sorts of videos and had people call to talk with me.  I actually became a distributor to get the discount which is well worth it.  

Unfortunately Tracy didn't tolerate this product well but then he seems to have the opposite reaction to most all the drugs and meds doctors have given him and many other vitamins as well.  He has a history of Novocaine and the like for stitches and dental work not working AT ALL.  That has been a bummer for him because the doctors won't believe him and they just start working away anyway.

I know of one other person who also had a negative reaction.  When I asked they thought perhaps we started out a bit too enthusiastically and felt we might want to start with smaller amounts as the body detoxes and cleans out.

So the point is- each person reacts differently and YOU are responsible to find out what works for you.  Others are having success and I feel it's worth putting out there for you to decide what works for you.

I am in touch with others healing ALS but I am too tired to continue to list everyone now.

I will at some point.

So-why were we not told about ANY of these at diagnosis or when we asked directly about them?

Why don't they tell us all the simple things that would make ANYONE more healthy most especially those with ALS?

Because they don't pass the AMA's tests.  They are not scientifically proven to work we are told.

We were told they don't want to give us "False Hope".

Hope is HOPE!!!  

Why not?  Placebo is more effective than most of the drugs they have out there with NO negative side effects!  (Expect that rant for another post).

They say there is no real PROOF any of that works.  uuummm.... aren't real, live, breathing people PROOF that something is working if the doctors are giving us a 100% fatality rate with their diagnosis?

I hope this gives you the understanding that you CAN heal.

Send me your questions and success stories!

Swelling or No Swelling - that is the question

I had someone ask me what we did to stop the swelling in Tracy's feet and legs.

I am thrilled that someone has asked.  It's exactly why I am posting this blog instead of sleeping.

After Tracy was in a wheelchair for a few months we started having a real problem with swelling in Tracy's feet and legs.  He had never had this kind of problem before before ALS since he was always on his feet building and kicking and running.

Doctors noticed and said it was part of living in a wheelchair and we dealt with it for months. They recommended he eat less salt and keep  his feet propped up most of the time.  This did not help much.  I asked again and again about what we could do to improve the situation and asked specifically WHY his feet were swelling. 

 They gave us WATER PILLS as an answer!

Just so ya know- BAD Idea!!!  It only took one pill for us to realize THAT wasn't fixing anything!

Again- he had never taken medicine so I didn't actually realize what would happen and they didn't warn us, assuming I would be bright enough to realize you sit next the potty when you think it should kick in.  Don't give people in a wheelchair WATER PILLS!

 

Tracy's legs got so big that the skin was stretched to the point it looked shiny and I thought he was going to POP!  I even asked about it. The doctors mumbled about occasionally someone's skin will split but not to worry. YIKERS!!!! 

 They tell us get compression socks.

Maaannnn, I wish I would have filmed this because we would, for SURE, have made the $10,000 on Funniest Home Video.  I began to wonder if the doctors were just getting even with me for asking so many darn questions.  

So you have a guy who can't use his legs much  (which is why they tell me his legs are swollen so they KNOW there is a mobility issue) and tell me to buy compression socks.  End of story.  No details except don't keep them on day and night.   I have NO idea what I am getting us into- literally.  I am thinking they will be like the tight pantyhose we get to hide our blubber and keep our Vericose veins from popping out so much.

I get a medium size and get home to see they won't even fit over my arm.  I think- hey- I can do this.  I've dressed squirming kids for years.  I start at his toes and squish the sock up like you do so as not to run hose and go to town.  Push, pull, wiggle....huh...I turn my backside to him and straddle his leg and go at it again, yanking and stretching.  Sweat is now popping off my brow and quite honestly I think Mr. T was enjoying my struggles.  I realize- OHHHH..... I will ROLL them and then vvwwooopp!  They will just slide right, huh....grunt, huff,  ....  after about 20 min. I get one sock on, Tracy has now lost his sense of humor about the whole thing and wants to quit.   I'm like- NO WAY Jose!  I have come this far- we are getting that stinkin' sock on so quit whining and PUSH!!!  The second one goes on in about half the time and his poor sausage legs are now propped up on pillows.  The idea I guess is to basically cut off the circulation so blood and fluid can't get there and they stop hurting because they are now NUMB because the socks are so tight!  I MAKE him wear them for several hours because that is how long I spent buying them and getting them on him.  After the second day we both realized lancing his legs or buying leaches is a better alternative to compression socks and they became very expensive dust rags.

Back to asking the doctors what else we can do.  They answer - learn to live with it.

Worst answer EVER!  Do they not know me by now?

My hypnosis background jumps in- I asked doctors -was there any benefit to his body or health by having this swelling. They assured me NO.  The body just couldn't pull the extra fluid from his feet because of lack of circulation due to immobility.  

So- here is the magic!

I did research and found no positive purpose to having his feet swell.

We stopped processed foods for the most part.  You will be amazed at the change when you stop eating food from boxes, cans and packages!! Happens FAST.   We changed to Sea Salt instead of regular salt to cook with.  Make sure to get added Iodine.  We didn't know about that at first.

 HYPNOSIS and a good foot message fixed the problem in 3 days.  

While relaxing Tracy with a GREAT foot massage (that he LOVES),

I told Tracy he had NO reason to have swollen feet.  His heart is strong, he didn't have a circulation problem and I wasn't putting up with it!  It was RIDICULOUS!  I told him his body moves fluid constantly through his whole body and it knows how to absorb this extra fluid and use it in a healthy way or get rid of it in a comfortable manner.  Now that we both KNOW there is no reason to have swollen feet everything will go back to normal.  

I massaged his feet vigorously pushing the fluid up his legs each night saying I am so glad we finally figured this out.  Pointing out how good his legs and feet were looking.

In 3 days his feet were back to normal.

It took a few weeks of maintenance, massages, drinking extra water,  cleaning the diet to keep the swelling gone most of the time.  We used to prop his feet up a lot of the day to insure no problems but in the last year or so he sits in his chair with them down for hours at a time or even days if we are out and about with no problem. 

WARNING:  If you are not a certified hypnotist or doctor be very very careful about just jumping into saying things to change your body processes!!!!  Your body is just a machine.  Your brain activates your body.  Your mind programs the brain.  Your mind and body already have a program going and is wise.  NEVER just tell your body to lower your heart rate or get rid of a pain, etc.  These could be signs of possible issues.  I researched and checked with doctors over and over again and then did more research on my own before I worked with Tracy.  His mind accepted my suggestions because he was relaxed and  I was 100% SURE I was right about this and he knew it.  BUT- I also gave suggestions to do it in a healthy comfortable way.  If there had been positive purpose to the swelling I had ideo motor responses in place to indicate the subconscious did not agree with what I was saying.  

 

BAD Advice

 Below is a reply from another ALSer to my husband's blog when he talked about getting terrible advice from the doctors on so many things.
I found it NOT surprising but still shocking that it matches EXACTLY what we were told and her solution is EXACTLY what we did as well.  We are both past our predicted death dates because we stopped listening to the doctors when they make no sense.

We did not communicate with each other until way past these situations.



That advice to eat whatever I wanted because to lose weight is a bad thing? The worst advice I ever received. I followed that advice and ate everything I ever loved -- all the salt and chocolate I ever desired. I got obese and I developed hypertension, thyroid problems and high cholesterol and tri-glycerides. Then I was told to tube-feed -- and the stuff I had to put in the tube had a mixture of different types of sugars and chemicals. Another mistake !! I am still told at clinic by the "nuritionist" to tube-feed because I am spending too much energy eating by mouth. Guess what!! I read everything I could about nutrition and dropped weight and was told not to drop any more weight. I dropped more weight and ignored what they said about tube feeding. I'm sorry but I didn't like being obese and having to wear clothing three or four sizes bigger. I still like to look good and don't want to have a stroke and diabetes. When I told the nutritionist that the tube feed was full of sugar, she said "why is that a problem?" and when I told her I didn't want diabetes, she said "If you get diabetes, we will deal with that. There are tube-feed formulas for diabetics." Totally ridiculous!!!

Healing ALS- Down to the Nitty Gritty

http://www.ericiswinning.com/

Go.  Go now.  Go read this website and then the books they recommend.

There is so much information it can be a little overwhelming.  At least it was for me.

We thought we were living a fairly healthy lifestyle.

Both of us active and fairly fit.

Average weight.

As much of a shock as the diagnosis was the answer to healing ALS was nearly as shocking.

Stop eating everything you think you love.

Take zillions of supplements.

Do crazy detox treatments.

Stop all of the activities you think you love because it's causing you stress.

(Yes, even if you love doing them).

Spend hours a day meditating.

IMPOSSIBLE I thought.  Tracy thought it was complete craziness.

Realize this now- If you don't do it by choice now-

You will LOSE all those things anyway.

The sooner you start the sooner and faster you heal.

Detox, eat right, breath right, think right, drink right, love right, nutrition, meditation.

All the things that every person on the planet should be doing to be healthy and happy we need to do times 1000.

I started with the easiest things first so I could check some things off the list and feel like we were on our way.  Don't get too caught up in doing EVERY thing at once.  Since I had no idea how important each thing was related to the other I got overwhelmed trying everything.

Since Tracy was not interested and didn't believe ANY of this would make a difference he was no help on the research and to this day still baulks at taking too many supplements or practicing breathing or meditation.  This part is a daily struggle for us and I fully believe that if Tracy was all in on healing we would see much greater changes.

Even with the resistance Tracy will admit an Organic Diet makes him feel better and we aren't great about that either.  We do the best we can with the money and time we have.  

So- Read the site above and get started healing today!

Send me the results so we can learn from what you are doing too.

 

Boettcher ALS Research page

https://www.facebook.com/groups/162829270442617/

This is our Boettcher ALS Research Page.
Friend me and then look in Groups on the left of my page to see what is there.
There is no system to it.
It is an assortment of random healing ideas, therapies, modalities, diets, alternative hospitals.... for healing.
Some is specifically ALS related, some is for Cancer, some is just good living or interesting ideas.

Until I get a chance to start listing our diets and nutrition and detox and books etc. I thought this might give you a chance to start doing your own research.

What HE can tell you- It's the Diagnosis, not just the Disease that is so Deadly

  I hope this won't be considered cheating but I am going to copy and paste my husband Tracy's last post from his blog, 

http://als-whaticantellyou.blogspot.com/

here because I feel it relates exactly to the point I was making in my last post and now this one.

Believing you CAN HEAL is the first most important idea to understand completely.  It's now been 4 years as of March 15th that Tracy was diagnosed with ALS.  Even with my daily assurances and evidence and actual people with ALS who have healed coming to visit us, there is still that constant echo of doom rattling around his heart and brain. The diagnosis replays in his mind over and over.  Your body follows what the mind tells it to do.

I am a hypnotist and it's the irresponsible method and style of diagnosis that creates the deep imprint on the subconscious that NOTHING we do will help, that does so much damage.

If we had been diagnosed with a VERY serious disease and that we needed to completely embed ourselves in to healing to improve instead of being constantly, consistently, emphatically told there is NO HOPE and Don't Look for Hope because those people are just looking to take advantage of you and make a fool of you, I wonder where we would be today.

While I have always believed that we can heal this or at the very least we can improve his health greatly, Tracy from the beginning, has believed the doctors diagnosis because- they are doctors. They sent us directly from the office to the internet to look up how terrible every single detail of this journey WILL BE and if we had any questions let them know.   Because they have FACTS- being stacks of dead bodies with the toe tag reading ALS we are told they know what MUST happen to us now that we KNOW we HAVE ALS.  

 Tracy really really WANTS to believe he can heal but it seems soooo impossible to him given their facts.  Add that to the typical ALS personality and you get the doctors results.

 It's been a big mountain for us to climb.  I have dragged Tracy up this hill on a journey, quite honestly, he had no interest in taking.  But he stays because he loves me.  Sacrificing your life for another is not the biggest act of love. Being brave enough to stay and experience the unknown when faced with what we have been told is. You must love someone more than yourself to continue to work each day to stay healthy and search for hope.  THAT is the biggest love there is and we are living it.

Even with this reluctance on Tracy's part, we have gotten off almost all medical drugs and are much better off because of it.  We have healed terrible swelling in his feet and legs that doctors told us we would just have to learn to live with because it was just part of living in a wheelchair.  NOT TRUE.   We stopped spasms and cramps.    Healed moles. Improved swallowing and breathing.  We healed (finally) chronic stomach issues. We healed his Diabetes. Normalized heart rate & blood pressure & Blood Sugar numbers.  All these things we were told we would just have to learn to live with.  They had no answers for us. Remember, our success is with Tracy not believing that anything would help.  It's still our biggest challenge.  

 

Tracy often looks at what he can NOT do now (or in typical ALS personality avoids thinking about it at all).  He looks at what matches what the doctors told him WOULD happen.  He suffers the loss of all that he loved being and doing systematically taken from him.  These attitudes and ideas ARE the STRESS that kills ALSers stacked upon the stress of their lives leading up to the diagnosis.

I will provide videos, scientific articles, books, testimonials of those who HAVE healed and how they did it and our experiences with healers and QiGong masters, nutritionists and ND's showing you CAN HEAL.

I am not saying we have all the answers. 

I am saying there is a LOT of information out there that has helped Tracy improve his health and there are many people out there who are farther along on their road to recovery than we are and are also willing to share.

Understanding the challenges we face will allow us to share information to create the healing we are all looking for.

 This is from Tracy's most recent blog post.

Belly ache

Usually I try to post something brutally honest or ridiculously irreverent or boring or unsubtle. Anything you want to add? Feel free.

Today I'm within my rights to inject what ever I want.

I'm convinced that my journey would have ended long ago if I'd known near the beginning exactly where I would be now. The fear of unknown is far less convincing than any actual manifestation of such. The imagination is but a trifle, feebly knocking at the door of reality.

The blistering attack that now approaches four years in its barrage has forever changed me in ways I'm still unable to fathom. I've an unequal led time to ponder, yet find myself trolling Facebook and stirring the pot full of easy pickings, drawing out conversations that would never exist in the real world with the principals drawn together in the social medium. Though I loathe my actions I relish the consequences.

What about me? How do I feel? What hurts?
I find it unattractive to share what is so unattractive to me. Put that on your hoop and roll it.

If I expound upon my condition it will put me in a mind to think about it and that makes me sick. Sicker. Shit. Now I'm screwed.


Reset. I've said this before. It will always bear repeating.

The single most devastating factor in the ALS experience is in the design of the diagnosis. It transforms the human condition from concerned to destroyed in a matter of seconds. Most will never recover from that. I'm living proof that, despite my tenacious demeanor, the words and actions have torn a part of my confidence to shreds. I'm certain I will never fully recover from the initial statement and ensuing protocols.

Stress is bad. You have 2 to 5 years to live. Quit your job and smoke on that, you poor, unlucky guy. What insurance do you have? Eat shit, any shit, get fat and you'll live longer. You live longer, we look better. Prepare for your coming doom by meeting the wheelchair guy, the nutritionist who has a general plan for all ALSers: don't detox because you will lose weight, don't worry about what you eat because you will stress and that is bad for you. Oh, by the way, don't forget to speak to the social worker (exactly what does that mean?) about your living will and DNR options and your wheelchair choice as being the proper design for your eventual core failure and extreme immobility since Medicare only allows you one. Get your affairs in order so you can enjoy what little time you have left. Let me introduce you to the feeding tube guy (you will live longer with one) and the vent guy (with a vent, you will boost our numbers by living longer). Hey, here's the number of a guy who sells wheelchair vans (on your own dime, of course). You want grief counseling? None. You want mental health counseling? Got nothing. You want your wife to be paid to care for you? No, but we can recommend an agency.


On and on.

This crap all happened in the first three weeks. It's taken a load of bandaids to suppress the damage and the wounds leak even now. Especially the one between my ears.

If only. Whatever. 

http://als-whaticantellyou.blogspot.com/

PEE-king

If you are wondering about the timing of this post I just picked up these sweat pants today from the seamstress who lives across the street.  ( I KNOW!  We live in the most perfect place.  This area has absolutely everything within a mile).  

What is unique about them?  Do you know?

Before ALS I was a very private person and my siblings loved to torment me to no end by hollering embarrassing questions down grocery aisles to watch me cringe but between healthcare people in our personal space and doctors asking every personal question you can imagine and checking every crack and crevice and me taking care of absolutely every single personal need for Tracy I have out of practicality, become much more open about discussing these issues.

So you won't have to ask, I am going to let you in on a few tips to take care of this very important daily function of life.  Peeing.

What you take for granted takes us a good deal of time and planning to make sure "everything works out okay".  Most handicap restrooms are not actually accessible.  Slapping the little blue wheelchair logo on the door DOES NOT in fact actually make it easier to get in and out of the restroom!  Things take a lot more time to get organized so you have to start way early.  Drinking enough but not to much too fast is important.  Actually FINDING a bathroom must be first thing when you roll in the door somewhere.  Carrying a portable potty (Gatorade Bottle) in the back pack has been a life saver on many occasions.

What do these pants have to do with it?  

Well, I tweaked my back last week, making it difficult to stand Tracy up to ...to - ya know...  So Tracy was forced to sit in his chair to take care of things.  With the very expensive and very limited fashion choices given to wheelie people we choose to wear regular clothes and struggle with the inconvenience in exchange for dignity, vanity and fashion.  Often times we will wear the college kids pajama pants that have a fly front. They are comfy, easy to wash and it is easy to deal with the elastic waist.  

It's been cold here in Dallas the past few weeks so I would usually dress him in some hip sporty sweatpants except that they have no fly front. (Yes, that was our very fashionable daughter Sarah's head exploding at the words hip at all but most especially near the word sweatpants).

So after making him wear the same 3 pairs of pants for the last couple weeks it dawned on me that if his sweats had a fly it would make things so much easier.  Surprise! The whole point to sweats is they are easy to pull on and off so they don't make them with a fly.

So for $5 a pair our neighbor took the fabric from the pockets that Tracy doesn't use and created these easy access pants for us!  Problem solved.

You CAN Heal

I should first introduce myself and my husband and give our back story but I know when I am researching at 2 a.m. going on the third day in a row without more than an hours sleep at a time- I just wanted ANSWERS!  NOW!!!!

So- introductions to come in future posts.

For now- Meat and Potatoes-

I think the most important thing I can tell you if you are on an ALS journey is that YOU CAN HEAL!!!

I know, I know...that's not what the doctors told you.  Get used to that.  There is A LOT the doctors either can't tell you, won't tell you or don't know and won't admit.  

Yes, I understand- they TELL us repeatedly and emphatically they KNOW exactly what IS going on, what WILL happen to us even though they admit they don't know anything else about ALS.

And I have found that is absolutely true IF we do exactly what they tell us to do. 

So, if you want THEIR results- (batting zero in the "success in healing ALS category" by their own admissions) follow their advice exclusively.  If not, perhaps consider looking outside that tiny little box they are doing their best to stuff us ALSers in.

Isn't that kind of Ironic?  They admit they don't know what causes ALS, they don't have a way to stop it, they don't know why we get it and they can't even improve our health but they are the Absolute Authorities on who we should or should not listen to when it comes to this catastrophic diagnosis.  

Luckily- I just wasn't that smart because I could not understand what they were telling us.  It made absolutely NO sense to me.  Because of that I continued to do research and still do every single day.

I didn't bother to look where the doctors said to learn about ALS  (All the Horror Stories) because that is where THEY have been looking for years and years and years and all they found is how to die from ALS in the manner they feel is easiest and best for you and your family.  Too harsh?  mmmm..... maybe....but in the words of my husband who has been diagnosed with ALS- tough- it's my blog and I'll say it like I see it.

 I promise not to Doctor Bash constantly but I want to make the point that doctors are only one resource to listen to when creating a healing plan- No matter what they tell you.  This was a huge hurdle for me to get over personally so I will revisit this idea fairly often not only to help you but to exorcise my demons as well. 

(Oh- this is where I am supposed to insert that I am not a doctor and I am in no way giving medical advice and none of my information is meant to be followed as medical advice cause you know that would be called "practicing medicine without a license").  OF COURSE I'm NOT giving medical advice!!! Their advice already had us buried 2 years ago!  I am doing the opposite of medical advice!!!!  This blog IS meant to give HEALING ideas to add to your quality of life and happiness and I absolutely DO want you to investigate the things I tell you.  And I DO want you to heal dramatically and easily then tell me all about it.  

I have my bail money in my top drawer should the medical powers that be feel so intimidated they need to track me down and try to silence me.  BBWWAhahahahaha.aahahaha....  Silence me! Ahahahah...  As if!  Tracy has been trying to figure out how to do that for 40 years!  He'd GIVE them my bail money if he thought they could! ahahaha.a.a.a.a

So, the information I will begin to share on this blog is just my opinions that were formed from years of constant research speaking with people from all over the world who have healed or who are healing from their diagnosis of ALS.  Literally, from all over the world.  Not in the new hip literally meaning obviously NOT, but from the olden days literally when it meant ACTUAL Factual.

Speaking of facts- A fact is only a fact until it's dis proven. Do not take any information from anyone or anywhere as FACT until it satisfies YOU.  Not from me, the doctors, your preacher or anyone else but YOU.  You read, you understand, you research and YOU will heal YOU.  Your journey may be completely different from others so don't think because something didn't work in the same time frame, way or amounts for you as others it doesn't work and you yell SCAM!  FRAUD!  It's up to YOU to figure out what heals YOU.   

I know at this point when I heard things like this I was thinking-awwoohhh... great, I don't have time to wipe my own nose and haven't slept in a year and now I'm supposed to research....(fill in the blank).  ugh!  NO WAY!  But I did.  And I am willing to share.

SO Never Fear!   I am going to give you a heap of hopeful healing information for you to get started on your healing journey.

Step #1 to healing ALS.  Realize YOU CAN HEAL.

Compelled to Post

I am compelled to create this blog in conjunction with my husband, Tracy Boettcher's blog, ALS-What I Can Tell You.  As wonderfully entertaining and creative and expressive as his is, I find from a caregiver/healer viewpoint it's less than helpful when it comes to the day to day details of how to function living with the ever changing challenges of our new lives.

It is my sincere hope that I can share information to help those who are looking to improve their lives and the lives of those they love by giving practical tips, ideas and inspirations on living with ALS.

Be BOLD people!  Ask away!!!  Whatever it is you need or want to know, feel free to ask because I know how helpful it would have been for us to have known all this when we were diagnosed instead of having to treasure hunt for each and every tidbit of information on our own.

Please comment often and share who you are and where you live and any details of why you are interested in reading this blog.  I hope to learn as much from you as you do from me.
This is how we WILL all learn to heal ALS.