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.

Little and big things

It started with my cold.  I was as sick as I'd been in years (discounting my bout of food poisoning last winter).
Then Pat caught it, and of course, with an ALS patient, nothing is simple.  Yesterday afternoon was probably the scariest time we've had since the trach.   Infection is the bugaboo of our lives, and when something takes hold that quickly and firmly, you just hold on and wait it out.  Dr. Bedlack had told us Superman Christopher Reeves died from an infected bedsore. Germs are our kryptonite.  We walk a thin line in our house. We have to attack infections quickly, but not use antibiotics so much that they are rendered useless.

On Facebook in November, there is a common thread.  Many of my friends write thankfulness posts.

Here's mine.
I"m thankful for big pharma.  People love to hate them because you know, they are big and they make alot of money and don't seem to care. BUT BY GOLLY...without the extremely costly research, testing and marketing, I wouldn't have had the z-pac to give to Pat when he needed it. SO THANK YOU BIG PHARMA...you've made me a happy camper.

Here's another corporate shout out.  Pampers, Huggies, and whoever else makes baby wipes. If you think about it, if we didn't have disposable wipes, we would have to use rags to clean up messes, wipe faces, etc. And that means more laundry, folding and all that other stuff I hate. So thank you Kimberly Clark, Proctor and Gamble and any other corporation that makes home health care easier.

What about cleaning supplies?  Here's a big thank you to Clorox bleach spray.  We can disinfect the bathroom sink in about five seconds...Plastic trash bags? We just tie them up, toss the stuff and don't have to worry about disinfecting the garbage cans.  Plastic cups, plastic straws?  use 'em toss 'em.   Infection control is inversely proportional to landfill control, but in this case I DON'T CARE...

Thank you  Permobile.  When Pat went back to bed, Thor and I kept watch. I was reading THE IMMORTAL LIFE OF HENRIETTA LACKS but that chair is so comfortable, when I sit it in, I'm able to nap as easily as in any leather recliner.  So I did.

Thank you to our girls.  They took me seriously when I told them not to bring the grands around, but they knew enough to visit themselves.   Clare brought me Kung Pao, Anna brought scotch and we watched a really terrible silly movie,  Laina is bringing St. Paul's Barbque tonight.  Emma gets a pass because there is sickness in her own family.

As Laina texted this morning, it was a dangerous Battle of the Boogers, but we are winning...

...so far.

THANKS BE TO GOD.

Paper towels from hell

It's been too long since we last met.  Lots of changes. Pat nearly died and lo and behold, just as the good people at Duke Hospital called for that code blue or whatever that is so scary, our Rector walked in. Proof that we are not alone...and not in that X files sort of way.
Anyhoo, Pat was trached, our lives changed again and WE ARE STILL HERE!

The biggest change was the advent of the nurses, for which we are immensely grateful.  I was drowning, due to Pat's deteriorating condition the summer of 2014.  I had quit working but we were still tending the babies twice a week.  I was about to lose my mind, then unbeknownst to us,  we learned (following the procedure), the VA provides nurses for trached patients.

 After a weeks stay at the Duke ICU, we came home to what seemed to be a MILLION PEOPLE IN OUR HOUSE...it was the welcoming/ check in committee from the nursing company and I just about slit my throat. Pat was useless.  He sat at his dynovox and all he did was tell everyone (who were all women) how pretty they were and I was losing my mind. They were doing what they had to do and I was able to contain myself but MY GOD....They presented me with a HUGE ROLL  of paper towels, telling me that now that they were here, in one of those bizarre insurance things, they would be providing us with enough paper towels (seemingly to encircle the globe twenty times over) so I wouldn't ever have to buy them again. It was a bizarre rendering of LETS MAKE A DEAL I traded my home to complete strangers, but I get a lifetime supply of really scratchy huge rolls of paper towels. The only thing missing was Don Pardo.

 I decided to focus my wrath/anxiety/insanity on the paper towels and it got me through the night.

In honor of THE CLEVELAND INDIANS WORLD SERIES, I have provided a baseball comparison for scale. GO TRIBE

Whispers

Our bathroom renovation has begun and there is  plastic sheeting that protects our bedroom from the dust that such work entails.  This sheeting runs from wall to wall and whenever I walk by it, my air wake creates a gentle movement that has reminds me of the veil in HARRY POTTER and  THE ORDER OF THE PHOENIX wherein the people who have gone on before, whisper as the living walk by.

I'm waiting to hear from Sirius Black soon.