Many years ago my parents travelled throughout the country with their smallish dog, an intelligent, well-behaved beast who never have made any kind of mess in a motel room.  Mop had the best of veterinary care and was religiously checked for fleas and ticks by my mother.  But his hygiene was of no concern to North Carolina and dogs were not permitted in NC motels.  This law simply meant that my parents would drive through North Carolina and not stop.  They never spent a dime in that state because they were offended that their baby was banned.

Were they still travelling, they could probably add another reason to boycott North Carolina should the marriage law pass.  Although their reasons would differ, they would not condone contributing to the economy of a state that feels they need a law to provide a definition; to use the state to provide another way to treat others with legalized bigotry; to deprive children of civil unions medical care under the guise of states rights, and to couch religion in state law.

At this point the vote is not in but they already oppose gay marriage so the projection is that this new restatement-rights depriving bill will pass; that North Carolina will step back not one but two centuries.  What a waste of time, money, human energy. This bill wasn't necessary for people to make their feelings known.  It is a political acting out in a time when we need to be joining hands. 


 
 

This morning's email disclosed a Costco flyer advertising home delivery for a shiney industrial-looking stainless steel trash can with a sensor which automatically opens the can when you are only inches away.

Have you ever shared a house with dogs or cats who like to rummage through the garbage looking for tasty morsels?

When we were first married, I had my childhood cat.  A dignified lady who would never raid the trash.  But we also had a puppy and a kitten who would work together into the night to get into the garbage container under the sink. It was adorable to watch Grover and Tira working in concert to find dessert and leave the rest all about the kitchen floor but it was awful to clean.

Over the years we've had many trash scavengers and no matter what type of lid, someone has always managed to beat the system.  It may have taken considerable pushing, prodding and pawing, but in the morning, there was the trash all over the floor.  The pets who had eaten the taboo (chicken bones, onion skins, that forgotten stuff from the depths of the refrigerator) often regurgitated it as well.

Since my return I have put a couple of shallow but heavy boxes on top of the carfully bagged trash in the can - we don't produce that much - and not wanting to risk toppling the boxes, the dogs have left the trash alone.

And now here is Costco offering - at a very reasonable price - the perfect solution for them. A heavy lidded can which requires no opposable thumbs, no teeth, no snout - just your presence 4" away to Open Sesame.

I wish I could say that our extended holiday trip went well. I would like to report that the car ran flawlessly and the front end problems on which we had spent many dollars had been totally identified and resolved. That leaving on time brought us to a perfect motel room while there was still daylight.  And that Steve was on his best behavior, happy to spend precious time with his family members. Boy do I wish I could say that.

It only took 45 minutes to get Steve into his clothes and out to the loaded car despite his protestations that he could not walk down the steps. So we were off to a fair start only 10 minutes off schedule.

Somewhere across the innerbelt bridge I hit a pavement change and the front end shook like a jackhammer for 30-45 seconds. I should have placed the call to the mechanics at that point but I didn't know if we had a pattern yet.  Well past the airport we hit another odd paving something and more violent vibrations lasting even longer. Pulled off, called the guys at the shop, got back on the freeway heading the opposite direction to the shop where they looked carefully, found the problem which must be fixed another day. "Safe to drive?" I asked. "Drive carefully, it won't fall apart."

Although Steve wanted to return to our house, we were back on the road once again. Slowed down when I came to the first pavement situation and the vibrations only lasted a few seconds.  Forgot exactly where the second spot was and spent a minute slowing the car to stop the shimmy. Surprisingly that was the last of the car issues as I learned that I must adjust my driving to suit the car and that our destination has much better paving than Cleveland. Kind of made me wonder why this would be and figured it is a political mix of who's doing who.

After stopping for gas and a quick dog walk, Steve began telling me that I must be lost, that we were driving in circles, that he couldn't see the motel which was about 90 miles away. We should just turn around and go home.

Central Ohio farm country is amazing in its simple beauty  It invites you to drive through and take what you will in your mind's eye. And then it dumps you back to an east-west highway. "There's a motel, let's go there and then we can go home."  "Not yet, the dogs want to see Cosmo and you need dinner."

The dogs and I went without him to his sister's house that night. The dogs had a chance to run free and I picked up the pre-shipped but unwrapped presents to take to the motel while dropping off food for better refrigeration.

The next day he tried let's make a deal. His plan was that I would go to his sister's house where many of her husband's relatives would be gathering while he would stay at the motel...and then we could go home. "Sorry, no. You said you wanted to see your family for what you feel will be the last time."  I knew he was in emotional pain but I also knew he needed to see them.

When we pulled in the drive at noon, he announced that he could not walk - of course what he meant was that he would not walk and for the rest of our Saturday and Sunday visits he had to be pulled up from the chair or couch and supported completely. He would make his legs fo limp at first although his upper torso becomes rigid. By placing one hand mid-back and holding his arm to his side so that he would not grab something to stop the forward progress to and from the bathroom or the table, I could move him forward as he took short hurried steps.

His PD postural instability causes him to hunch forward but lean backwards - it is an odd combination and creates many falls for people with Parkinson's. Sometimes I had to place my hands under his arm pits and just lift. Often in that situation his legs will precede him as he tries to resist forward movement that way. He's still easier to propel than carrying a slippery 40 lb bag of dog food but not by much. 

Anxiety attacks are not pretty - prolonged attacks such as this can be stressful and ugly. I should have been much nicer but I was not. I just couldn't shock him out of this one. Tom and Sheila were very solicitous which he didn't acknowledge at the time but it meant a lot to him.

When we left that evening, he was very grateful, he said, "for the doctor at the clinic who was very nice" while I'd been mean (he was right on that account)  Of course the doctor was his sister's husband...who is not a doctor although she is a nurse. He also said that now that we'd been there we should just head back home. "It's late and you don't like driving in the dark.  Besides all of our stuff and your medications are at the motel. We'll go there."  

The next morning we had a 9:30am call for Xmas breakfast.. Before I took the dogs out for a walk I suggested that he stay away from the presents in boxes and bags next to the door as he opined that he should open them. So while I walked the dogs he walked around the motel room and managed to fall onto the stack of presents I had wrapped until 1:30 in the morning. The dogs were fed and some presents re-wrapped while he made more bargaining attempts to no avail. He was steered to the car and into his seat.  When we arrived he could, of course, no longer walk.

Neither one of us is comfortable in large groups of people and we've always handled social situaions differently. I avoided them when I could and just became an observant wallflower if I couldn't, while he told me years ago that his trick was to find someone who looked more miserable than he felt and to talk to them.  I guess he felt lost in his coping methods because his assumption was that no one would be more miserable than he.

He spent some time talking to his middle sister who had put together some albums of old family photos from the ones she had found when the sorted through their late mother's things. There was considerable guessing as few photos were labeled.  She had thoughtfully set aside pictures from his childhood as well as news clippings. We will go through these again when I scan everything for our children.

I should mention that his inability to support himself was not an attempt at pity - he really prefers a low profile. Not walking was the physical manifestation of the inner turmoil and fear.

I have no regrets about making the trip, I actually had no time for my own anxieties and was able to talk to Tom's relatives and finally felt much closer to my sisters-in-law. I'd like to make the trip next year and in the years to come. .

At the motel that night I realized that if I had him sit on the wheeled desk chair I could move him easily from bed to bathroom; that he enjoyed. We used it the next morning.  Although he did walk on his own in the room, he had to be propelled to the car. I did not encourage him to make a pit stop when I gassed the car, he had protective underwear and my wrists were getting sore. 

Once in the driveway at home, he had to be helped again but he'd been sitting for 4 hours straight so I got that. Up the two flights of steps which he handled fairly well, he finally agreed to try the walker which he'd shunned for two years..

With some furniture adjustments he is now able to use the walker from his bedroom into the bathroom. He walks easily when using it but later in the day he forgets where he is going and leaves it behind.  

Throughout the weekend he asked me what people would feel about our divorce. "No," I would tell him, "we're not divorced."  "Separated?"  "Does this feel as if we're separated? You call me every 15 minutes and I appear."  But I know he thinks I might just be another illusion - vivid dream - or hallucination.

Somewhere, locked from daylight, are the reasons for this extreme anxiety. We have a year to find and address them but I'm afraid he will just tell me that we'll talk about them tomorrow and tomorrow or tomorrow..

For now we will go through several weeks of recovery to separate the anxiety from the Parkinson's disease. To exercise the body so that perhaps we can exercise the mind.  Trapped within that brain is a keen intuitive mind and a unique memory which I miss..

Yesterday was a good day.

Although he needed a bit of help getting to the bathroom, on the way back he used his mantra, Head Up or Look Up and Move Forward or Walk Forward.  When he feels it and lets his body respond. it calms him. Then he can shift his weight from side to side in order to both propel and balance his body in a gait which takes him safely past the stairway and to the office. 

His day was calm, pancakes for his breakfast, chilli for lunch followed by pudding, reviewing email and reading news online followed by TV watching and exercise on the mini bike. He knew I didn't feel well and he was able to let me sleep past dinner time until his hunger impelled him to ask me if I preferred he try to open a can of something so that I could continue to sleep. I went downstairs to make dinner.

In the evening he watched Pawn Stars which he always enjoys and Pickers for the first time. He really liked seeing people drive to small towns and old barns or garages looking for relics of the past.  When he grew tired, I gave him his last pills so that he could go to sleep. 

A couple of hours later I heard him talking to the older dog who slept beside me as I sat responding to online corespondence.  I went to his bedroom and held his hand. I told him that it was Rita and not Harry who was sleeping outside his doorway. He looked at me and asked if I saw the garage doors and how we had gotten back from leaving Cleveland.

He asked why we had travelled south to Brunswick about 33 miles from here and ended up at a car dealership.  He was afraid because he didn't have his cell phone and he didn't know how we had gotten so far away. The logistics were upsetting to him.  I explained that he had been dreaming. That his body was here and the travelling had been in his mind; I touched his head. He asked me to tell her where he was. I asked him whom he meant and he said my name. "Do you know who I am," I asked.  He gave the verbal equivalent of a shrug.

This morning without medication he walked to the bathroom on his own. He was calmer as I washed him and helped him change clothes. After another breakfast of gluten-free pancakes which he says taste better than "real" pancakes, he checked his computer and watched HGTV rather than news. He feels comfortable watching construction because he knows the field. He can sit there for a long time, comfortable in a world from his past.

After a late lunch he said he really did want to talk about what I remembered from yesterday's trip. Again I explained that only he held the memories since that "trip" had been a vivid dream. Suddenly I understood that he had incorporated the travels of the Pickers with his memories of days when we used to drive around the country roads of Ohio, looking at farms, fields, small towns, new development and old houses, taking photos.

So many circuits have been rewired or mis-wired. His real history is mixed with recent data. How can he trust what I tell him when his memories of 12 years past are mingled with the new imput of 12 hours ago. Where is reality?  

The meds, the disease create distorted but new memories which he wants to be able to share with me so that he can make sense of it.  My inclination is to want him back in my reality where only hope is a willing suspension of disbelief. I deny his need even by gently telling him that it was only in his head. Then he is sad and doesn't want to talk about it any longer.

The deck garden is doing well.  I don't have all of my tomato cages yet and I'd like some more large rolling stands but the herbs and vegetables seem happy.    So do the marigolds which are protecting the tomato plants from aphids.  We are growing Sungold tomato plants. Sungolds are a small yellow  to yellow-orange tomato which is an absolute delight to the mouth.  Sweet and tangy. They are a taste pleasure to rival dark chocolate.  On a hot summer's day, they are a preference.  

The sungolds are not the only eagerly anticipated development of the summer. We are waiting to hear of the birth of our grandson.  Any day now.  The due date is in 2 days but who knows.  His mother is shooting for the solstice. 

With our first born the birth-date estimate was not a guess.  We knew to the minute when she was conceived.  And she took that to be a serious commitment.  She was determined to be born shortly after the clock struck her due date. Labor began just after midnight and she was giving everyone what for within 3.5 hours. 

Our grandchild's father was delivered a few weeks before my guesstimate; however, he weighed to the ounce and was exactly the same height as his sister.  They looked nothing alike. And growing up they were not in any way similar. 

I really wanted to be surprised by this grandchild. I wanted to wonder for months:  Would it be a boy? a girl? a pony?  But my son or daughter-in-law let it slip months ago.  Probably a good idea because it kept me from buying stuff in yellow, a color I like but which my son and daughter-in-law do not.

The element of surprise is still out there. I have no idea what to call him.  Months ago I received an email asking for family input on names for this little stranger. In turn I sent out emails requests to all family members.  We sent him links to family geneaology and made other suggestions.  None were well-received it appears. For now he is known as MoonUnit.   I know that the excited parents did choose a name but they are not talking.  

So we await the news that whats-his-name has been born and we will all be thrilled.

No sooner had I "saved this entry" than I received a text message from our son.  She's in labor!

So almost 15 hours later we have a baby: Stone H Moon:

Each year we announce on our blog, Parkinson's Focus Today that April is Parkinson's Awareness month.  Near the closing of 2009 I even had some correspondence with a lovely woman at the Parkinson's Disease Foundation to encourage one of the big national organizations to sponsor the PD awareness month in order to have the national calendar listing for PD .  So there was some discussion between PDF and the Michael J Fox Foundation and everything fell into place.

All the while I kept thinking, wouldn't it be wonderful if we had that announcement and people all over the world asked, Why Parkinson's disease?"  And they would ask, because they didn't know anyone with the disease.  No father, mother, grandparent, sister, aunt, brother, neighbor, someone they had seen at the store or on TV.  Because research had finally led to the series of cures that were necessary and people could be treated from the onset or mutated proteins could be repaired or something equally miraculous had become commonplace. 

What if they had a war and no one came?

I've always talked to my cats and dogs in full sentences except when teaching commands.  Commands are short phrases - that is the language of instruction. Let there be no mistake about what I expect and what you need to do. But in other matters, conversation is more comfortable for all parties.

Had someone dared to tell me that I could only baby-speak to my children, both the upright 2 foots and the often patient 4 foots, I would have ignored them. ..permanently.   I could not disrespect the process of communication which develops in the brains of both children and animals.  

While not all communication is in the spoken word, it surprises even me how well it worked with our Lab Shepherd who was one of the smartest and wisest beings I've known, after my Father, of course.  I never had to obedience train that puppy.  He simply grew up knowing. 

He would walk with me while I trained the two females at home.  He would walk as close to me as possible, almost as if to say, put me on the leash, I can do it!.  When it came time for a command, he was the first to comply.  I walked him late at night off-leash because I knew that he would obey at a word.  The girls, were not quite as responsive although they performed at the top of their classes.  

I caught him chewing on an antique desk when he was a youngster.  I  looked at him and simply said, I'm disappointed in you, never do that again.  Looking down, he dropped the small piece of trim from his mouth and that was that. He never did it again.

Harry and Rita talk to each other often without sound.  A look, a move of the body, a slight touch and they know.  They are trying to teach me.

Blakey the black cat, runs to me frequently to tell me that the dogs want to come inside.  He is insistent.   He will stay at my side as we head down the stairs and then wait for me to open the back door.  His brother Mongo is the speaker.  He has excellent body language for happiness, surprise, indignity, fighting, friendship.  And for everything, he has a distinct voice.  it is his lovely trills of happiness when I unexpectedly pet him that warm me to the heart.  The sound is like a warble, his eyes sparkle, and his body smiles.

The children grew up with a dictionary in almost every room.  Dinner should not be interrupted by a phone call but if the meaning or spelling or entomology of word was unclear, it was time to stop to look it up.

I started scribbling here because I wanted to thank my daughter for putting her words to print.  Her mind is not as cluttered as mine and her writing always delights me.  She is concise, warm. observant, knowledgeable, organized, smart and very, very funny. 

Because I used to type my son's papers in high school, I knew how he and the written word often seemed uncomfortable with each other. Although his humor was dry and droll and smacked of a hidden intellectualism, I didn't see that in his writing. 

Years passed and I one day I received an amazingly well written email from a young man who seemed to share my son's email address.  This man wrote poetry, he had found a voice in sharing the news that he was in love.  A  highlight of my life was hearing him read the eloquent and beautiful vows he had prepared for his wedding.  

My heart was filled with warbling and trilling..

I know that I am at heart a political idiot.  sometimes I have hope.

We've listened to the stories from Egypt for many days now.  We've heard Egyptian views relayed by be American and British reporters and journalists. We've heard before.  We'll hear it again.

Politics - much easier when we can watch from an ocean away.

The great truth remains:  "What we've heard are the same lies that we've heard..."  as remarked by one reporter today. 
 
Much like the Dylan Thomas aunts who are always the same aunts, so is the speech of politicians.

Are we surprised?   Of course not.  Should we be surprised - I'm very wary, very leary of too much surprise.

The first baby steps are still anticipated and rejoiced.

Steve follows the news - the news everywhere.  Sometimes he reads too fast and things get a bit skewed but that's happening all the time in news reporting so why should he be different?

Yesterday he read a new story about a fellow with Parkinson's Disease who had taken a drug which works wonders on PD symptoms but can be hell in the side effect area.  The side effects include vivid dreams, hallucinations, compulsive behavior which can become similar to addictions. He took that medication a few years ago along with another PD med and did indeed begin a journey down a twisted road.

The interesting thing is that the manufacturer  was aware of the problems but didn't issue warnings so pharmacists and physicians weren't warned by anything official; and that left only one line of defense - the written anecdotal word.  The horror stories of compulsive gambling, porn addiction, the ten$ and hundred$ of thou$and$ of debt, the broken marriages, the possible suicides.

Even stopping the meds didn't help my husband entirely because he still had PD and he still had to take medications which had similar chemical effects on the brain.  So although the side effects abated, there is fallout to this day.  We see it after sundown.  The illusions or vivid dreams are real to him.  The people in the yard don't appear as often, certain websites aren't visited nearly as often as to risk his PC again. But they will never disappear altogether.

Had the authoritative reporting been present, would his doctors have read it?  Would they have made the connection?  Would they have opened the discussion?  How many even knew their patients had serious problems?

It leaves me to wonder why doctors don't trust patients or listen to their stories; and in turn, why patients sometimes don't trust doctors with certain information. 

I'm sure that some patients talked to their doctors about the strange new occurrences in their lives; but many didn't.  They didn't trust that this aberrant behavior wouldn't  become part of a record reported to their employers or they were so caught up in the compulsions that they saw nothing wrong. The hallucinations may even have been seen as a turn in the progression of the disease and more medications were overlapped into the pharmaecopia.  Who knows?

It wasn't until some patients began reporting the issues and the medications they took, either through blogs or online discussion boards that the general PD population started recognizing themselves. Some just stopped taking the pills and had one helluva time going gold turkey.  Others told their doctors they were stopping and if they were lucky, were told how to titrate down over a few weeks.  That still left them with an incurable progressive neurodegenerative disease. 

Steve read about the problems - the information did not come from his doctors.  His timing was fortunate and he found first one and then another medication to replace the two he had discontinued.  The total effect was not so bad but he was one of the lucky ones because the timing worked in his favor.

There may be only 6 degrees of separation but sometimes it seems like 180.