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/

fantastic families and where to find them.

If you are at all familiar with anyone who has a pretty awful disease, you know that for anything to work right, you have to have lots and lots of support.  Garrison Keillor, writing about his dad's final illness, said that for him NOT to have to go into a home, he needed all of his six children. That is about right.  Dad had five children and it took all of us to get him through that last transition to the big grammarian in the sky.

We're  incredibly lucky because we have our gang all within spitting distance. I can  call and one of them will be here within a minute if I need them, but most importantly, they know WHAT is important. And they will figure everything out before surprising me with a great treat.

It took quite a coordinated effort because Pat was still pretty sick, but one bought the tickets and met me at the theater, and another one ran her children to a third one so she could run back to our house to sit with Pat while I was gone.  It took 3/4 of our  daughters, massive coordination and logisitics, but mission accomplished.  Got to see the movie based on Harry Potter "apocrypha" as my sister, BB, calls it.



Here's the trailer.

 http://www.fantasticbeasts.com/

Macgyvering, not Reaganing

Recently Pat and I  were invited to participate in a living with disabilities discussion with people smarter than we who will be inventing things to make people like us have better lives.  They were Duke students of Professor Kevin Caves  (he is the go to tech guy at the DUKE ALS clinic and what he doesn't know about technology isn't worth knowing).

We were asked beforehand about concerns.  One of the questions was, what is the number one thing you'd like to be able to do now that you used to be able to do?  I was stunned by Pat's answer. I thought it would be walk, drive, pick up a grandchild.  No, his answer was  "I want to pee in private."

There is something that you can buy on Amazon called a condom catheter, and it is exactly what it says. It is a condom, but instead of keeping dangerous bodily fluids in, it has a hole on the bottom that you attach to one of those bladders you put on the patients leg or hang from the bedside.  While  I shopped online, I noticed there are no SMALL sizes available.  You can only get medium/large, which is a hoot. I guess since men in these positions can no longer compensate by driving silly cars and outrageous boats, the world has to give them this small consolation.

Now if you remember from a post awhile back, one of Pat's larger concerns when finding out he had a fatal illness that would destroy his muscles and render him an immovable body losing control of his life,  was.."who is going to maintain my beard?"  Although I, however am happy if I have clean underwear on when I get killed in a car wreck; I knew that strapping a bag of urine on his leg wasn't going to work for my stylish guy.

Again, Amazon came to the rescue. We found wine bags that  hide the bladders quite nicely. Then the problem arose that because it wasn't attached to the leg, the urine backed up onto his chair, rendering my meticulous man, wet and stinky.  AHA! pool noodles.  I cut one of those styrofoam pool noodles in half creating a reasonable facsimile of a lower leg,  wrap the bladder around it and  hide it in the bag.

For the first time in over 4 years, Pat can pee in private!

Converse and Cub Scouts

After a pretty nervewracking Saturday, the grands returned on Sunday. Some of them came with fellow Cub Scouts to clean our yard.
Pat, the geezer scout from Troop 36 , Keokuk Iowa on the Mighty Mississippi, was able to get out and thank them.


But MOST importantly, we got to see new shoes.