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/

You Have to Be Carefully Taught

http://www.youtube.com/watch?v=-JjiaRJqKIU

This song from Rogers and Hammerstein's SOUTH PACIFIC deals with racism, but it applies to actually anything passed on from generation to generation.  The Bible tells us that the sins of the fathers pass on to their children.  I think that's true, if you consider the cycles of poverty, abuse, lack of self responsibility etc.

But it also means you can pass on good things too.  Respect for teachers/education, hard work and an understanding that you are responsible for your health and happiness are some things that are passed on.

Taking care of family members has been something that has passed on in my family.  My parents took in Mom's siblings two times when needed.  One was for a short time and Aunt Clara went on and became a contemplative nun in the mountains of New mexico.  Uncle Booster came to live with Mom and Dad for the last couple of decades of his life.

What this meant to our family is that for some of us, we could not count having our own bedrooms much less a bed to call our own.  For the last seven years my brother lived at home, he slept on the couch.  I don't remember him ever complaining about it.  For awhile, my younger sister slept on a pallet in the foyer.   I never heard her complain either.  (This was during her  "Little House" years and I think she pretended she was living on the prairie in a small cabin.)

What we learned from this is that taking care of people can cause serious disruptions to the family. Our parental units' tiny fuses became miniscule

. We learned to time bathroom visits on a microsecond basis.  What we also learned was that my parents would have done it over and over if a need arose.

When my father could no longer live by himself after Mom died, and he was disabled due to cancer, my siblings took turns coming  every  weekend to give me a break; even my Florida sister who had (and is still along with her husband) managing the care for their multi-disabled son.  I spent most of that down time sleeping.

 In all the years that my parents lived near us and were frail medically, my siblings never  second guessed how I was handling them.  I tell this to people how well we all worked together and then  I hear others' horror stories.

Now these same siblings of mine are taking time out of their busy lives to come visit us, now that we can no longer visit them.

 I am thankful that we were carefully taught.

They're playing our song

We are really thinking Pat's going to be around for awhile, but we went ahead and planned our funerals with our Rector. 

 I'll go pre-pay at Rich and Thompsons and then the girls (who SHOULD be prostrate with grief) won't have to do anything but drink martinis and receive multitudes of mourners.

One word of advice, I wouldn't wait until you get a deadly disease. Go ahead and do it now if you know you're going to stay put for awhile.  Otherwise it can  be a little depressing.  For some reason, it didn't depress us, I think because we spent most of the time trying to remember the exact Bible verses we wanted.  Somewhat frustrating which kept the other thing at bay.  

The music was very easy to pick though.

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.

Sometimes

I had quit praying for the last couple of weeks.  Life got in the way.  I had to accommodate new equipment, medical appointments, family doings and of course, I'm trying to get through the Harry Potter series by Halloween so I can watch the wicked Voldemort get his comeuppance by All Saints Day. We all have our personal ambitions.

I usually do my serious praying in the sauna.  It is the second sauna Pat has made for me and I am exceedingly grateful to him for doing that. But I'd spent recent saunas planning the day, weeks and months and so God got a pass from me.  It was not deliberate.  I just forgot about it all.  And then one day last week I remembered, I started with the usual one, "Our Father," and burst into tears.  It was like the time my parents lost me at the Canadian Exhibition.  I cried because I thought they had abandoned me to a Canadian orphanage and then when Dad showed up to recover me, I cried even harder.

I don't understand prayer.  I doubt I ever will. I do think that though Lucy has it right when says in THE CHRONICLES OF NARNIA, "Sometimes he likes to be asked."  Although I know the Supreme Being is not a untamed lion, I think about that when I am hesitant to ask for help.

Prayer is as ephemeral,persistent and strong as those pesky spider webs I am forever walking through.  It is our link to heaven.  It is always there and we just have remember to not brush it out of our face, but grab onto it with all our hearts.  It is through prayer, ours and others, that have helped us through this.

I went to the Catholic website for healing prayers.  I figured they've been in the business for over 2000 years, they should know what they're doing.  Here's my favorite.

"Touch gently, this life you have created. Now and forever more." Amen.

He was hoping for the Moon

We're getting a real therapist today to help with Pat's stretches.

My therapy consists of pulling on his arms and/or neck until he screams in pain. The clinic was less than impressed by my methods and thought to do some quick intervention.

As soon as we were notified of this home visit, Pat said, "I hope it's Daphne."  He told everyone at the soccer game last night he was getting DAPHNE.

This morning, WES called.  He's coming at two.

Pat is hiding his disappointment quite bravely.

Above All, Do No Harm

This code for any medical caregivers applies to me.  I think I violated the basic tenet when I shoved Pat out of bed the other night.

Of course, no action has no consequences and consequently, I've not slept since, wondering when I was going to do it again.  And this morning's paper had a big story on adults dying from bedrails. I guess the solution is to hire someone to stand over us and make sure it doesn't happen again.

Perhaps one of those laid off during the government shutdown?

Here's a good story from an Ohio author James Thurber that has absolutely nothing about pushing people OUT of beds but I thought about it anyway.

http://www.newyorker.com/archive/1933/07/08/1933_07_08_011_TNY_CARDS_000228579

The Naked Valet-part deux

 THE MORE THE MERRIER is a very funny movie regarding the overcrowding of D.C. during WW2.

The seemingly prissy, very cute Jean Arthur is coerced into letting two men room with her for a couple of days.  The older one is Charles Coburn and the hunky one is Joel McCrea.

Jean Arthur's character devises a morning schedule that breaks each minute of the three characters'  preparation time into seconds so that they can all bathe, dress, eat breakfast, and get out the door on time.  It is, of course, a shambles.

Our mornings are sort of like that now.  I have it all planned from the minute we finish reading the paper.  I get Pat ready to shower, I run down fix my oatmeal, I help Pat afterwards, and then I fix his breakfast.  While my oatmeal is cooking I clean equipment and make the bed.  While Pat eats his breakfast I go for my walk.  While I brush my teeth, I clean the kitchen and run the dishwasher.  While I swish the mouthwash, I shower.

 For some reason, I have forgotten to allot anytime for me to dress and it is always the last event to occur. I can't seem to figure out how to fit in that critical part of my morning. I throw something on, usually  from the closet and not the dirty clothes hamper and race out the door.

There was a remake of that wonderful move, starring my beloved Cary Grant and another favorite, Jim Huttton. The girl is unimportant, but it's playing on TCM this week.   Not nearly as good, but Cary is always fun to watch.

Nitey nite

The whole point of sleep hygiene is to let your body know it's bedtime and it's time to settle down.  Also, it is a very civilized way to live.  We have most of our best conversations at night when we've been in touch with all the girls and know that everyone made it through the day safely.
 Sleep hygiene is a wonderful thing.  And very simple to do.

1. Establish a regular bedtime and wake up time.

2. Starting 2 hours before your regular bedtime, don't look at a screen that has any sort of backlighting.  TV, computer, smart phone anything.  An e-reader is okay if  you have to use a lamp, but not one that is backlit so those new tablets are a no-no. We DVR anything we want to watch that comes on during the blackout period.

3. At night, turn the lights down low.  In the morning, either turn the lights up as bright as they will go or stand with your face toward the sun. This lets your body know that you are serious about waking up.

4. The bedroom is not for reading, watching tv, or fighting.  It's only for two things and one of them is sleep.  The other isn't playing parcheesi.

5.2 hours before bedtime, listen to music or books on tape, or talk.  But whatever you do, make sure it is low key.  This is not a good time for heavy exercise or even a walk.

Another thing is no drugs.  We cheat on that because of Pat's situation, but at the most he gets 1/4 of an ambien once every other week.  We use melatonin for the most part, but really the best thing is turning off the electronics.

http://www.youtube.com/watch?v=sal_pp_ptJQ