Time for a little Celebration

Originally we did not plan to have a ceremony to denote Tracy's passing here in Dallas.  Tracy and I had even discussed it a couple times.  Since we didn't socialize much here in Dallas we thought it would make more sense to gather in Peoria, Illinois where he lived most his life and I had lived all my life until ALS hit us, which we plan to do this summer.

But Mr. Popularity has left an impression on so many people that have inquired so wholeheartedly about what plans were for his funeral that we have decided to celebrate Tracy's crazy life here in Dallas at our house in the style we know Tracy would have loved.

A man of many many talents, Tracy had a passion for playing chef and was famous back home for hosting Wednesday Night Feasts so family had an excuse to get together and catch up while test tasting his latest culinary concoctions.  Holidays are so busy no one really gets to just sit around and jaw about things, so this was a great way for family and friends to stay in touch with no pressure.

With that in mind, we will host a casual celebration to enjoy life together in the way Tracy taught us.

If you are interested in coming please contact me on facebook or make a reply here or Email me at amyboettcher@gmail.com.

Thank you all for your love and support.

The Adventure continues.

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.

Tracy to the End

 I wanted to make Tracy proud and surprise him by being as bold and unreserved as he was about sharing the nitty and gritty of his story but .....I am no Tracy.

I am finding it so difficult to share all the personal emotions and grizzly details of Tracy's last days on this planet in the way Tracy was so adored for.  Yes, I know.  You can't have a preposition at the end of a sentence.  I hear ya, I hear ya....
For which Tracy was so adored.  Better honey? huh.....  Even NOW he nags me about grammar.

Because he would be so proud, I do feel compelled to share the fact that Tracy chose to go to hospice and leave this planet on his own terms.  And I am sure he would want you all to know that he broke ALL records for hanging in longer than anyone they have ever dealt with in his situation and he also used up more than their entire drug supply as it turned out Tracy was incredibly resistant to all the drugs they so generously bestowed upon him, repeatedly.  It seems there was no kryptonite for my Superman.  They said they had never seen anything like it and I doubt they never will again.

It was no surprise to me and I told them that going in.  I knew Tracy would be Tracy to the End.

The Journey Continues

I thought Tracy's passing would be the end of his story....but no.

In typical Tracy fashion his story has taken unexpected twists and turns that I feel I must share in order to do him and his blog justice.

This will take me some times as I am not the prolific writer he was but I am sure he will be guiding, inspiring and spell checking and grammar checking me through every word, thought and expression.

My first thought when I opened his page was- WOW!  Over 141,000 reads!!!  He would be THRILLED!

I did my best to find a way for him to Eye Gaze a last message to me or the kids and to tell ya the truth the first thing he did was check his blog to see how many hits he had.  We did our best to find a way for him to write but it was not meant to be.  But YOU ALL were THAT important to him.  You have kept him alive.  You allowed him to feel like he still mattered and that what he thought felt and said were important. Thank you, thank you, thank you.

In the weeks and months to come I would like to share not only information about Tracy directly but also the physical practical things we learned that allowed us to LIVE this long WITH ALS instead of dying from it each day.

Please, if you know anyone with a chronic neurological disease, please, send them to HealingALS.org.  The people there have healed themselves of ALS and other diseases through common sense (once you know and understand what produces health) methods.  They are there for you in emotional support and practical advice.  They know where to get supplies and what worked for them and why.  They are willing to share all this information because they are JUST LIKE YOU.

If they can do it so can everyone else.

Thank you for the comments and replies. They mean so much.

We love you all.

Tracy in Spirit and now Amy too.

Farewell

Greetings to you, Tracy's faithful blog readers.  This is Rachel, his daughter.  I just want you all to know that he is finally at peace.  He left this world yesterday afternoon without pain or distress.  Thank you for your readership.  He loved sharing with you.  Writing was one of his many, many talents.  One of the few that he could continue as the ALS progressed.
Thank you for bringing him such joy.  

Rally their cause

HealingALS.Org 

Please check out the site and give me your impression. These people, some of whom I've been in personal contact with, are making an extraordinary effort to get their story out. The only way they can succeed is with widespread exposure, which has so far eluded their grasp. I implore my readership to help them break through their impasse by providing the catalyst necessary to grow their fan base. Please read everything, share everything and spread the word. Watch the video, look for me. I'm not quick to promote much of anything, but have a personal connection with this particular group. It is all good.

A note to my neurologist

Dr. Heitzman,

     Many things to address :

Is there any good news attached to the added revenue brought forth by last year's ice Bucket Challenge?

Is there any evidence to support the notion that liver malfunction is a primary culprit associated with the progress of ALS, or is it simply collateral damage?

Can you write a prescription for a cough assist device and the accompanying suction device?

What is the prescription for excess saliva?

A year ago you alluded to a possible connection between nutritional consumption and its effect on the progression of ALS. Does the theory have legs?

Do you believe that politics has hampered the progression of effective research in this country, and if so, do you recommend we search out alternative methods or foreign studies that circumvent pharmaceutical limitations?

If we wait for "the science" to prove or disprove alternative modalities, don't we severely limit scientific research by the very political limitations imposed upon the mainstream research options in America? We were informed by the ALS Association that no money collected from the ice Bucket Challenge would be allocated for research outside of the purview of the FDA. Is the FDA in control of dissemination of all funding for all approved research?

Do you have an opinion on cannabis oil?

What is the significance of recent news about a viral link to ALS?

Thank you