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....

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/

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.

All Pretense Aside

THE VOYAGE OF THE DAWN TREADER is the third of CS Lewis' Chronicles of Narnia series.  In it, one of the characters, the aptly named, Eustace Scrubb, is a vile little fellow.  In Narnia, he becomes a dragon which is not all that great and with the help of Aslan, he endures a  painful shedding of the tough scales to reveal the wonderful boy he really is at heart.

CS Lewis expands on that theme of shedding our mortal coils of pride, greed etc. in his book for adults, THE GREAT DIVORCE.  Everyone has to face their behaviors or human side and cast them aside in order to reach heaven. If your possessions and personality give you comfort on earth, it's hard to let go. Some can't do it and remain locked forever in a grey purgatory.

I've been pretty lucky.  I've taken care of three people as they learned to cast off their mortal coils.  My parents and now, my husband.  I've watched them come to an understanding that they have a stale date, as yet unknown for Pat, but it is there.  And I've REALLY been lucky because in all cases, it's been an easy road for me.

My father was, like many people, a complicated man with many layers and for so many years, not that easy to get along with.  When he got his stale date on the anniversary of Mom's death, his shedding of his dragon hide began immediately.   His layers peeled away as he sat on our front porch, prayed and thought through his life.  He went through his self examination with a fine tooth comb that only a Lutheran PK could manipulate and at the end, revealed himself to be the sweet man we all suspected was there.  It made my job easier as his caregiver because he appreciated everything that was done for him, and although there may have been some regrets he couldn't get to that place while he was still able bodied, I think we were all grateful we got there at last.

In the God Squad column this week, Rabbi Marc Gellman addresses this issue of what to do when your caregiveree isn't that wonderful.  I hope I'm like Dad when it's my turn to be on the receiving end and not that lady.

http://www.tmsfeatures.com/columns/religion/the-god-squad/25506609.html?articleURL=http://rss.tmsfeatures.com/websvc-bin/rss_story_read.cgi?resid=201403111830TMS_____GOD_SQUD_ctngs-a_20140313

The Modern Laocoon

We finally made it back to church after an absence of six weeks.  

As usual, the readings were stark in their relevance.  

Our first Psalm reading upon our return to church was 116 which included this verse 

 The cords of death entangled me,
    the anguish of the grave came over me;
    I was overcome by distress and sorrow.

We have various machines to help with the ridiculous amounts of mucous ALS patients create. There is a vest that pounds  Pat's chest to loosen the mucous, a cough assist machine that helps him bring the loosened  gunk up and then what I call a snot sucker that deposits it neatly into a disgusting plastic spittoon.  It was these machines that enabled us to avoid the ER and we are exceedingly grateful for them.  However, every one of of these machines has a power cord as well as a flexible hose that is the conduit between the patient and the machine. The pounder has two flexible hoses that are filled with pulsating air.  Dealing with these double headed hydras as they envelop my body detonates the latent F-bombs  in my head. 

Even as I wrestle these these writhing, slithering bodies into submission, I remember though that, for us, they are cords of life.

Our youngest daughter and her family recently moved back to God's country (or I guess I should say COUNTY).  In fact, they live right down the street from us.

They have two children, one toddler girl who refuses to talk, and one five year old girl who can't stop.  The five year old resides in that funny realm somewhere between fantasy, reality and insanity.  We notice there is alot more glitter on the couch since their arrival from Japan, and other than BOB's gasp of dismay upon seeing, PINK babies in the toy chest that had been previously the home of nothing but steel gray transformers and toy guns, we've all adapted well to their return.

Miss Mess 3 and I were discussing ALS and the effect on her Pappy.  She was bemoaning the fact he couldn't lift his arms any longer and she said, "It's like his battery died."  This was about the most succinct description of ALS I'd ever heard.   And then she proceeded to tell me how she is going to marry Sonic the Hedgehog and have his babies.

Not yet

We probably have more end of life discussions than your normal household.  We have to.  I want to be perfectly clear on Pat's desires because I don't want him mad at me for all eternity,  if I accidently send  him home before his time.  We know he has a fatal condition and so we are perfectly prepared for the worst, but there is always that small voice at the back of our heads that whispers, "not yet."

We've just been through about three weeks of intermittent illnesses of varying sorts, all of which could have easily gone way south at any time.  After the first bout, when we made it through the night and we discussed plans for the future, the determination was no midnight emergency room visits for us.  We have most of the equipment necessary to deal with Pat's issues and I don't want his last earthly situation to be alone in a room surrounded by the same technology we have here.  It may end up like that, but as far as we can control things, we say NO.

I think we're on the comeback trail with this last bit of sickness.  This has been a grueling time, very tiring, but spiked with fun and visits from family and friends.  The biggest birthday party in the world happened and we welcomed home our youngest daughter and her family from the far side of the world .  Our girls drop by and gag at the snot collected in the de-gunker, but they return the next day with their families.  The baby is crabby because he, too, is recovering from bronchitis and we all have survived that arctic cyclone, the polar vortex. (Of course I had to get that in there.)

There is so much loveliness in living. The sun is shining, it should warm up quite nicely for the rest of the week.  Is it any wonder, we both whisper, "not yet."

Happy Birthday STEPHEN HAWKING, 72 years old ALS patient who for over 40 years has digitally shouted "NOT YET!".

Baby it's cold outside

I remember Dad on Saturday evenings, fiddling with the dials on the radio trying to catch the Ole Miss football games.  It was a long way from Oxford, Mississippi to Northeast Ohio and he was desperate to hear something.  It was also a long way from then to the 500 ESPN channels we have now.  He would alternately scream SHIT or HOTTY TODDY and looking back, I don't know if it was a commentary on the fragility of the signal or our team.  This was between the golden years  of Charlie Conerly and the second coming embodied in Archie Manning. (It was probably around the time that Charlie was making money as the first Marlboro Man. He was a handsome devil and looked good on a horse.)

I now feel Dad's pain.  One of the unexpected consequences of this ALS rodeo is the daily fight we have in the van.  I have never understood the heating/defrosting systems in automobiles. Its why I moved south for goodness sake so that I wouldn't have to mess with the damn things. For defrosting the windshield, I find my VISA card works just fine and I have always kept gloves handy so I wouldn't have to worry about about anything else. I have no problem with turning on the AC in the summer. You just hit a button and it's on.

Unfortuately, one ALS sympton is an out of whack metabolism. Pat runs hot and cold and it is NEVER conveniently. Rather than cold in the summer and hot in the winter, it's t'other way around.  So whenever we've started driving down the road in the van, he's having to tell me how to operate the heating system.  I end up mad because he's hard to understand now and he's frustrated and it quickly becomes one of those "Can this marriage be saved?" issues. Finally, I understood the problem.  

Somewhere near The Company Shop on a recent trip to church I screamed,

"I can't do analog! I'm a digital sort of person." 

 It made me feel better, even if Pat didn't get any warmer from that thought. 

Raking leaves is not an activity for those with OCD.  I have other neuroses, non of which interfere with this pleasant autumn activity. My ADDism is perfectly suited for raking leaves and raising children.  Children's messes and noises rarely bothered me.  I was so easily distracted, I often forgot why they were upset and we would just go on to a new activity.

It was also good for our traveling days of following Pat's  ship.  I realized that if I had my passport, glasses and a credit card I was good to go.  A driver's license was handy, but not a necessity.  We had four children which helped too, it was a nice even number to keep track of. They soon learned to pack for themselves and I rarely cared what they wore as long as they were decent. Our youngest forgot to pack extra clothes for one trip and hence she wore the same thing for a week.  She was, I think, around 2. She has since learned to pack more than one set of undies and totes her own children around the world by herself with great aplomb.

This casualness which was so helpful to me with the kids, isn't so good now.   I find that I have to notice messes and have learned to pick up trash immediately, because there isn't anyone (Pat) coming behind to do it.  This has been one of the hardest lessons.

Pat is the clean freak in our relationship.  He told me one of his biggest fears when we learned about the ALS was that  his beard would get untidy because he wouldn't be able to trim it properly.  I have learned to do that and to also pick up all the bits of leaves that come in through the doors on windy fall days.

Pat is very good about not nagging me when I miss something on the floor, but I am getting better at keeping things straight. I think this marriage can be saved.

Fred Astaire He Ain't

We had the opportunity awhile back to attend Alamance County DANCING WITH THE STARS GALA.  It was a local whoop de doo and our son in law was one of the stars.  This was a fundraiser for Little Pink Houses of Hope, an organization that provides really cool beach vacations for families undergoing the stress of dealing with breast cancer. It is a very worthy cause and one I can get on board with because it is about fun, and I'm all over that.

Our dancer didn't win, because I think he just doesn't have the twerking gene, but also, one of the other stars had a secret weapon...he was a tap dancer, which blew all of the competition out of the house. It was so much fun.

On the way home though, Pat verbalized something I'd been trying to gel in my head.  He said, "This is how well organized cancer causes are. This fundraiser was so specialized.  This was for vacations.  ALS is still just trying to get research money and just get the word out."  I think the Catfish Hunter ALS closet in Raleigh has loaner beach wheelchairs if you want to borrow them.

The ALS association is doing a grand job of getting the word out.  There are walks, beer festivals and other things but compared to the behemoth that is the Susan Komen effort, we are the red headed step children of the disease front.  We're jumping up and down screaming..."LOOKY HERE LOOKY HERE!"

And again, it's all about numbers.  EVERYONE knows at least one family that has been affected by cancer. In my own family, that's probably how we're going to bite the big one.  Pat's the first person I've ever heard of other than Lou Gehrig and Steven Hawking with ALS.  But, the more we talk about it, the more the word gets out and maybe, just maybe..our grandchildren will end up twerking- or tapping- for an ALS fundraiser.   We can only hope...


http://vimeo.com/77240992



http://www.littlepink.org/dancing-with-the-stars-gala/

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.

Why do we do anything?

I know some people wonder why I'm writing this blog.  I can only attribute it to Pavlov and his dogs.

A while back I was a columnist for one of the local papers in our County of Alamance.  No restrictions on what I wrote, I just had to keep it clean and free of politics.  No problem there - I was writing during the Clinton Administration, I was able to avoid both simultaneously.

Whenever I had a dearth of ideas, I would go for a stroll around the driveway or out in the horse pasture.  I never left the property-for some reason, there were too many scary dogs. (BIG ONES- I have since learned it is the tiny ones that have the sharpest, quickest teeth.)

Within 5 minutes of walking, the stories would just emerge from  wherever they'd been hiding and I could knock the column out and get it in right under the deadline.

Over the past 14 months since we found out that Amyotrophic Lateral Sclerosis was going to be a part of our life, I've had a couple of people mention I should write about it. I had to wait until  I had something to share and  I didn't want to do write if it was just going to be a whiney, maudlin, Pat as posterboy sort of thing. 

Then, when I began my walking regimen about a month ago,   I started thinking about this ALS Rodeo and so there you are. I honestly don't think this is therapy for me. I'm not sure why I do it, but I think it has something to do with those dogs that salivate at the sound of a bell.  I walk, I write.

And, if this ever turns into a whiney, maudlin, Pat as posterboy sort of thing, then y'all have the right to grab your mouse and give me a great big ole cyber-slap in the kisser.  

Can't even count on those

I thought I would be a widow by now. Hell, I thought I was going to be a widow on Boxing Day 2011.
Christmas Night  of that year,  I was lying awake next to Pat, who was doing his usual fitful sleeping and remember thinking, "he's going to be dead by morning and I'm not going to know why." Later in the Spring of 2012, I had a dream that my mother visited us from the other realm.  I kicked Pat to make sure he was still with me and she wasn't here on a "gathering" mission.

Pat had been sick for so long and then lost weight so quickly and deteriorated in other ways so quickly that by the time we got the Amyotrophic Lateral Sclerosis prognosis (dead 2-5 years from diagnosis) in May of 2012, I just assumed he would be gone within six months. I planned everything; what I would wear to the funeral, where I would sleep that night and wondered if our granddaughter would come stay with me for a couple of nights before I headed south to visit my sister in Florida.


Anticipating sudden, yet expected death does weird things to your mind.  Pat asked me to go to Barnes and Noble and buy him a book,  the second of the Rick Atkinson WWII series.  I looked at him and thought, 'Is he going to be around to finish it? Won't it depress him if he dies before he finishes that book?" and then I realized, "No, he won't be depressed, he'll be dead." Out of guilt, I went and bought him 10 books.

I wasn't the only one. My siblings all googled ALS, saw the stats  and rushed  here in  the summer of 2012 to get what they thought would be their last look at Pat.  We had a grand time and have had a couple of other visits with them since.  (In fairness I have to say that Pat's family was dealing with a series of serious illnesses and other things. They couldn't make it for visiting until a year later when things all shook out and then we had good times with them too.)

Another thing that happened was my health deteriorated. I kept on thinking, why should I go for a walk?  I don't want to miss these last few days with Pat worrying about my figure. And then in one week, my back went out and I got the cholesterol report.

So I guess the lesson is..Pat's still here, still got ALS, still reading those books and I'm trying to take care of me so I can take care of  him.

 I guess the only thing we can count on for sure is we will have to pay taxes.

Support isn't just about foundation garments

The other way we made it through the shock and awe period was the support we had from family, friends and church. ALS is too scary to face alone.

If you or your spouse gets the kind of news we got, you probably already have your family sort of fixed and your friends are already pretty well established.  But if you don't have a place of worship,  GET THEE TO A CHURCH!

A church is a great place for those big family celebrations, weddings, Christenings, Anniversaries, etc.  It's also a great place to go when things don't work out quite the way you thought they should.  Someone (and I'm not naming names here, but I think we all know  to Whom I am referring ) needs to be held accountable and if you don't have a working relationship with Him, now is as good a time to start as any.  You have to put on a happy face for your friends and children, but the Big Guy knows what you know and feels what you feel so alot of time you just sit there and cry..and then you go out for lunch and if you are an Episcopalian like we are, then a glass of wine is allowed too.

If church feels not right for you then there are support groups available, on line, in person and via telephone.  If you are reading this, then you have access to a computer which means you can Google just about anything and find some sort of help. Better to reach for the mouse than that bottle of Vodka beckoning you from the other side of the room.

Here in North Carolina we have the Catfish Hunter Chapter of the ALS Association.  Nothing you do is going to change what has happened, but it can help change the way you approach this beast called Amyotrophic Lateral Sclerosis.
http://webnc.alsa.org/site/PageServer/?pagename=NC_homepage

I would only caution one thing.  Be careful what you are reading, INCLUDING THIS!  If it makes you feel low, then by golly, go read the funnies.  You don't have to read every depressing thing ever written.

Comedy is Tragedy Plus Time

That's Steve Allen's quote.

Unfortunately for those with ALS and their families, time is something we don't have a lot of so we have to get past the tragedy or else our few days left are going to be spent with much wailing and gnashing of teeth.  And there is too much life around us for that. We HAVE to participate and by golly we are going to have fun doing it!

Not everyday is high hilarity.  But everyday is good, even the ones that aren't because they are one more day we have wrested away from this stupid disease.

Upon learning we were blessed with Amyotrophic lateral sclerosis (ALS), we did what I think most people do in that situation, went home and stared at each other for three months.  We went to church, work and hung out with family but alot of our down time was just staring.  That is known as the "shock and awe," period.  Which was punctuated by infrequent screams on my part whenever Pat tripped or made a funny noise.  A 1/4 of an Atavan helped me through that as well as going to our family therapist.  I also re-read Meditations by Marcus Aurelius.  Now there's  a guy who knows how to put your life in perspective. (Favorite line- "Man is but corpse with a soul." And, I think he stole that from an earlier philospher, Epictetus)  I finished the book first, then we were released by our therapist who helped us plan our first overnight in a nice mountain hotel and reassured us we would be happy again.  Finally, I was able to quit the atavan after about six months.  And holy cow, after time we did find that we were able to be happy again.  Even with this damn disease hanging over us. 
My GOAL for today is to learn how to spell Amyotrophic Lateral sclerosis.  I always have to google and then cut and paste it which hoses up my formatting. Sorry about that...