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.

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

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.

Square Pegs

The neighborhood where I walk in the mornings has very old pin oaks lined up between the sidewalk and the street.  Their growth area is about two and half feet across, which leads to an interesting phenomena.  The massive trees are all rectangular.  It's a good object lesson for young children starting to discover nature and then trying to capture it on paper.  They assume trees are round, but, if you show them the trees of Davis street, they will see another sort.  You can't quite fit that round tree into that rectangular plot of ground.

Amyotrophic Lateral Sclerosis is like that.  It just doesn't quite fit into any clear category. And, like those trees it seems to morph into something else, and unfamiliar.  In fact, when our daughter and I attended the ALS conference in Durham last year, the keynote speaker, Dr. Richard Bedlack of the Duke ALS clinic (and Pat's doctor) spoke to that.  He said the more they learn about ALS, the less they know.  They're not even sure if it is a true motor neuron disease.

No one even knows how many people have ALS.  That's why it is so important for those who have managed to be diagnosed with it get on the ALS registry.  In numbers, there is power.

http://www.alsa.org/als-care/als-registry/

ALS was first diagnosed by a French Dr. Charcot and until our favorite baseball player told us he was the luckiest man in the world, it was known as "Charcot's Disease."

Here's the link to the Wikipedia page if you're interested.

http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

My point  here now is that AIDS/HIV was unknown until really the 1980s and now it is in many cases considered a chronic disease due to medical advances. That has only been 30 years... The sheer numbers or lack of them often determine whether or not a disease will be tackled by the major pharmaceutical companies.  We've known about ALS for over 150 years.