an other imposed zen sort of life

One of our children is very frustrated with me because whenever she asks me how I'm doing, I always say fine or I'm happy, because right then I am.  ALS is one of those diseases that forces us to  live in the now.

This morning, we had one of those lovely "ALS Moments" which had followed a similarly lovely "ALS weekend". And both involved the toilet.  At one point, I was with Pat while he was on the throne and I had to ask him, "Do you want me to call the girls?"   It was that bad.  But we got through it and now he's all good, and so I'M HAPPY.  Because now he's better and the nurse (who had been late) is here and everything is fine again. For now.

And to be honest, my main concern this morning was
Please, please...don't die on the toilet like Elvis....

This wasn't supposed to happen

This is the Blog post I never thought I would write.

Today, Pat's outlived his prognosis by one day.   When he was diagnosed on May 24, 2012 the rule of thumb was he would live between 2-5 years.  Now he's at Five Years and one day. He has outlived his handicap sticker, three sets of battery vents, two vans, two speech machines, two nursing agencies and a dog.   He's a tenacious son of a gun.

This is not true of everyone  We know of those who died well within those parameters. This is a tough disease. ALS is hard on everyone.  We know medical professionals who have either quit or are planning on it because they can't stand all the deaths of wonderful people they've grown to know.

Of course, we've had help, I cannot stress enough how important the Duke ALS clinic with Dr. Bedlack and his gang have been.  The Durham VA Hospital comes through every time and their care for Pat has been phenomenal. Duke University Hospital and our local people, Drs. Bennett and McQueen at Alamance Eye Nose and Throat go above and beyond when we need them. The Bayada Nursing team got us off to a great start and we're looking forward to working with Full Coverage Private Duty Nursing now.

Since Pat has been diagnosed our grandchildren have also gone through changes. The oldest went from elementary school to worrying about college choices. And we have three newbies who came down to stay and be loved.

Don't pity us. We are here, still plugging away because of the choices we made.  Compassion,yes- such as you would have for any fellow creature of God - but don't pity us.  We have a wonderful life. As Ann Landers used to  ask, " are you better off with him or without?"  Everyday, my answer is "WITH!" and every day, I silently thank Pat for waking up.


Here's who we were at the beginning of the rodeo. That baby in arms was born after the diagnosis.



And here's where we are now.

 and here are the newbies to the family. The youngest is three. We anticipate meeting his children.

Here's to another five years and beyond.

Promises Promises

                  At the beginning of Lent  I'd made promises to a couple of Facebook friends that I would pray for their familial situations.  I did this via private message, taking to heart that bible verse about hypocrites praying on the street corners.   Also, because I know my prayer record is less than stellar, I thought doing this via private message would get me off the hook when I invariably failed.  Years ago, I'd  even taken a "centering prayer" class and all I did was end up trying to remember the lyrics to RED RUBBER BALL-the curse of adult ADDism. 

             We've had a couple of ALS induced funny weeks wherein nothing horrible happened, but I missed seeing BEAUTY AND THE BEAST and other things.  It also meant the kind of time, where when I go to bed at night, I am totally exhausted and  only want to read about the glorious naval battles of Jack and Stephen in my current MASTER AND COMMANDER book.  Instead, as soon as I settle in, visions of the names of the people I promised to pray for wander through my brain and I realize that I am not going to get to visit with  those brave sailors  until I fulfill my prayer commitment.  It only took me a couple of nights of this to realize, that if don't get to that prayer during the day, I will be reminded of it by the recipient of those upward thoughts.    

I have no problem understanding God as creator of the universe- a bigger than life version of Charleton Heston and Dumbledore.   I know God can move mountains while keeping an eye on the sparrow.  I am just a bit surprised to discover he is kind of  a nag.

Who knew?

No tumeric for Pat.  It interacts with his diabetes medicine and damn near killed him....this is why self experimentation isn't always a good thing.   Better days ahead.

CReATE-ive Red hot Valentines

Nah, this isn't going to be about love or romance but rather inflammation....One of the benefits of having a really terrible disease in the 21st century, is the plethora of information to be found on the interweb. The trick is to make sure you're getting good skinny rather than bad.   Pat  belongs to a group called CReATE.  Here's the downlow on it embedded in an email.

The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

www.RDCRN.org/CReATe Every once in awhile, they have something called WEBINARS wherein you can either listen in to people smarter than we discuss various topics or you can actually speak to whatever they are discussing.  We're such ignorant chickens, we usually just eavesdrop and they are always interesting.   This past week was all about inflammation, which apparently is a major health bugaboo.  Here is a quote straight from MEDICAL NEWS TODAY about inflammation: Chronic inflammation can eventually cause several diseases and conditions, including some cancers, rheumatoid arthritis, atherosclerosis, periodontitis, and hay fever You will note the absence of even a mention  of ALS.But we're used to being a wallflower at most medical dances.  So, we decided, since again, THERE ARE NO DRUGS FOR ALS..to self -experiment.  We're going for turmeric in a big way, which is an historically proven, safe anti-inflammatory.  Somewhere along the way, I decided what's good for the gander is good for the goose, therefore I've started taking all of Pat's supplements. So in addition to the protandim and lunasin, I'm hitting the turmeric trail.  I can't let him outlive me.

A right restored

A while back during a video conference with our favorite Dapper Dan, Dr. Bedlack, he commented "you don't seem to mind self-experimentation."  After laughing about that comment, we agreed.  It's not like we going to cut off Pat's head and put it in a strudel pan, but at a certain point when one has this sort of disease, and there is no cure, and no real treatments, you're sort of  willing to try anything. I mean, what's the worse that could happen???

So the news about the possible fast-tracking of the RIGHT TO TRY legislation is something that we can get excited about.   This legislation means that people with terminal illnesses who have pretty short term stale dates can bypass the usual FDA's years long approval process and try drugs that demonstrate potential help.  

I think those of us of a certain age (as the French say) remember those horrendous pictures of the Thalidomide babies in Life magazine, which is why the FDA has such rigorous testing. But for those families battling ALS and other diseases, this might be our only hope.

A couple of years ago, our state legislature approved CBD oil, which is a cannabis derivative.   Pat uses a couple of snorts of that a day and between that and the other supplements he takes, his progression is pretty slow.

Life is a gamble, whether you're floating on a raft trying to escape a country that is in chaos or wanting to experiment with a partially tested drug.  We're grown-ups, we know the risks. We want to try.

https://en.wikipedia.org/wiki/Thalidomide



https://en.wikipedia.org/wiki/The_Brain_That_Wouldn't_Die

The Mitford Sisters and Steve Gleason

Awhile back I read the  memoirs of one of the Mitford Sisters. They were those silly English girls  with a father who used to chase them instead of foxes  around the countryside on his horse (which could explain why some of them became either nazis or socialists.)   In it, there was a discussion of changing the log fireplaces into gas heat or something like that.  As the memoirist wrote, it marked the "end of the age of luxury and the beginning of the age of comfort."

Last week we watched GLEASON, the story of Steve Gleason, the New Orlean's Saints linebacker who is now in about the same stage of his ALS as Pat.  We both cried because he and his wife are SO YOUNG..and they have a baby and it was not what either of them pictured for their life together.   We had a chance to raise our girls and although Pat never hunted them through our pastures while riding his horse, we did have pretty good times, until the boys arrived and it mainly turned to worry.  We're still having fun with the grandchildren, but we both know that this is the gravy on our lives.

Steve Gleason has started TEAM GLEASON with the motto NO WHITE FLAGS.  This organization's task is to promote technology which Steve believes can replace many of the functions that nature has provided but ALS has removed from people.

We are big believers in this too, Pat's Permobile gets him around and the stairlift gets him to the upper levels of the house.  He also is  using a vent for breathing, a speech machine for talking, and  a mechanical arm to help him eat his food and play wizard chess.  



Steve's Team Gleason is SO ADAMANT about this that when Medicare didn't provide word processing/internet capable  speech devices for patients, his group stepped in, gave them away and made it possible for those people to communicate again.  The GLEASON ACT, which corrected this, was named for him.

https://www.govtrack.us/congress/bills/114/s984/text/es

http://www.teamgleason.org/letter2/

In the movie Steve and his wife struggle with the disease, caring for the son, reconciling with parents  and trying to get this great organization started all the while Steve's condition is deteriorating.  It is heartbreaking, but as much good work that they do together, from what I could see, they don't understand the importance of comfort.    The movie is a relentless look at living with ALS and this is what takes me back to the Mitford girls.

 The age of technology has replaced the age of comfort.  Steve is a whiz at using his devices, his wife is a whiz at caring for him.  They are a thoroughly modern couple but their bedroom needs an old fashioned hand to make it comfortable. I want to go down and help them organize their room to make it a safe, cozy place for them to visit at night when they are alone with the machines.  I want to get Steve out of that hospital bed and into one of those platform beds that can help him sleep comfortably with his wife so that late at night they can lie down together, hold hands and pretend it is like it used to be.  I want to get them nice dressers to hold all the trach supplies so they don't have to look at everything all the time and be constantly reminded of ALS.  They have done so much for all of us who suffer with this. I want to do this for them.  Because they could be our children and I want to help them.

https://www.tempurpedic.com/bases-and-foundations/