Wednesday, March 31, 2010

The Artist

I met up with my friend Ann, today, at the Minneapolis Institute of Arts. They were having a show called, Foot in the Door. Anyone who lives in Minnesota was able to submit one piece of art for the show, as long it was smaller than one square foot. It made for a great variety of art work.

Ann and I are both trying to find the artist in ourselves. She has worked with a mentor for the past year to help move her forward and learn to call herself an artist. I posted my work here yesterday for the very same reason. It's so easy for all of us to say that which we are not, rather than what we are. Does that make sense?

I am a writer. No, I am not a Hemingway, but we already had one of those, haven't we. But I am a writer - I have written this Blog for several years now, and I have published a workbook on setting and meeting goals. So, I am a writer.

I am also an artist. I have painted all of my life. I did have one water color lesson many years ago, but otherwise I have no formal training. But, I have worked with inks, water colors, pastels, pencils, oils and lately acrylics. Therefore, I am an artist.

Back to Ann and I getting together. Val, a teacher that we both worked with many years ago, recently died. She and Ann were very close and Ann spent many hours with her during her last few months of life. At the funeral the family handed out copies of Val's Daily Mantra. Ann had saved me a copy and when I came home I read it and want to share it with all of you.

May today there be peace within.
May you trust that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith in yourself and others.
May you use the gifts that you have received, and pass on the love that has been given to you.
May you be content with yourself just the way you are.
Let this knowledge settle into your bones and allow your soul the freedom to sing, dance, praise, and love.
It is there for every one of us.
Valerie Lyon

I feel like I always come home with a gift when I meet up with one of my girlfriends. Today Ann and I called ourselves artists. Today we lived up to much of Val's mantra. Today was an excellent day.

Until Later,
Ann and Dennis

Tuesday, March 30, 2010

Relaxing, Ann Style


Dennis likes to write poetry and I like to paint. I just finished this one today. It is titled Remembrance of Morocco

Monday, March 29, 2010

The Quietest One

Another of Dennis' poems.

The Quietest One

I am the quietest one
The voice with almost no echo
The conscience spread in a tapestry
of anguish, dark and coiled
Scattered and tender
Through all the silence.

I am the quietest one
The one who leaped to earth
With no more weapon than verse
And I've walked in the breeze
Of your fallen pain
And the sadness of your knowing
Your life is a churning of
Restless fountains.

Over you I have found
All the lost hours
Over me you have followed yourself
Like the sun, burnt
and Golden.
Annie, please remember me
As the "Quietest One."

Dennis, I will try to remember you as the quietest one. I promise to remember you as the one I had looked for for many years, found and adored, and the easiest one to love.

Until later,
Ann and Dennis

Sunday, March 28, 2010

Sleep, Interrupted Again

Dennis woke up at midnight with a mouth full of saliva. He decided he had to get up and sit in his wheel chair and move into the living room.

I do NOT like to be woken up in the middle of the night. I am not nice, as a matter of fact, I am down right mean when something wakes me before I have my full eight.

I don't know what I said, but Dennis told me this morning that I intimated that no judge in the world would convict me if I were to kill him. I agree that is an unacceptable thing to say, but sleep really is that important to me. There is also the fact that he fell when I was trying to transfer him from bed to wheel chair. I was half asleep and he was unmedicated - not a great combination.

From that moment forward neither of were going to get any sleep.

He coughed, cleared his throat and sighed heavily for 2 hours. Finally he decided he wanted to come back to bed. Then he coughed, cleared his throat and sighed heavily, but this time right next to me. I finally go up and tried to sleep on the futon.

That is when kitty decided to play with the plastic balls with bells inside. My sister brought these over at Christmas time, and Shiva has never played with them. But last night she had the two balls bouncing back and forth on the floor right next to where I was attempting to sleep.

This morning, when we reviewed the situation, I told Dennis I would try to be nicer about midnight wake-ups, but I would make no promises. After all, I am far from perfect.

Until later,
Ann and Dennis

PS, Yes, Lola. I was channeling Hendrix when I set up this new format.

Saturday, March 27, 2010

Oops

Just when you think you are computer savvy, something new comes along and makes you look like a fool.

For those of you that looked at my Blog yesterday, you may have thought you needed glasses. I am not quite sure what happened, but hopefully I fixed it today.

Have a great weekend. The weather here is beautiful, the sun is out and Dennis is feeling good. We are off to Electric Fetus, the local music hot spot for everything music related.

Until later,
Ann and Dennis

Friday, March 26, 2010

Change is Good???

I have changed some of the features of my Blog.

What do you like? Not like?

I am also encouraging followers to put a picture on the page - either of yourself, or something that represents you.

Today, Dennis and I are going to see his doctor. He still has a numb mouth, lips and tounge, but he was able to eat more today.

Until later,
Ann and Dennis

Thursday, March 25, 2010

Still Feeling Poorly

Dennis still is not feeling up to par. He hasn't eaten solid food for several days now. He has been complaining about numbness in his lips and mouth. When I returned home from work today, he was already in bed. I checked his temperature, and it was normal. Then I checked his oxygen level - it was running at 90%, a bit too low for my comfort.

I set him up with a nebulizer treatment and called his general practitioner's office. By the time the nurse answered the call, his oxygen level had gone up to 94%. She then reminded me to keep him hydrated and keep him warm. I made an appointment for tomorrow, and she assured me that if either of us continued to feel concerned, we should go immediately to emergency.

He is feeling a bit better now, at least he is a bit less anxious. He definitely does not want to go to the hospital, but we have a long standing agreement that he will if I insist. I hope this will pass and no hospital stay will be necessary. I am on spring break as of today, and would prefer that he is at home with me and not in the hospital.

Until later,
Ann and Dennis

Monday, March 22, 2010

Practicing Retirement

I received a call at work this morning from Raquel. She was throwing up and Dennis was feeling sick. I had to go home.

Once again, thank you boss for being so very understanding.

Dennis felt he had a fever, so I checked his temperature. All was fine - he is running a bit low, as is usual. He was warm, but he was under the down comforter without the fan running or the windows open.

Now he is digging through a drawer of socks and underwear. He has decided to downsize. He also filled a bag with shirts before Raquel left this morning. Mostly white dress shirts, I imagine. He doesn't wear them anymore for obvious reasons (if you have ever seen him eat, it is obvious).

I imagine I am practicing retirement today. How will I fill my day while Dennis is filling his? I believe I had better come up with a game plan.

Until later,
Ann and Dennis

Saturday, March 20, 2010

Urine

Our home smells like urine. Not like pet urine. Not even like an old folks home urine smell. But exactly like pee that has been sitting around for days and days.

Many years ago, I worked at a small school with uneducated janitors in charge. They waxed the floors yearly, but only washed the floors within a few inches of the edges. Pee in the boys room was contained, forever, in the wax.

Now my home smells like this.

Today I had Susannah wash the floor and toilet with bleach. When we returned home it still smelled. In the past I have found small leaks in Dennis' bags, but this time, nothing. Could it be that he is leaking through his bladder, around the area of the incision into his bladder?

Yuck, yuck and double yuck. I hope we can figure this one out.

MSA

I have had a difficult time making my way to the computer lately. When I have made a blog entry, it has been more out of obligation, than desire. It's not that there hasn't been anything to say, it's just that I haven't been able to figure out how to say it.

Ever since I received the phone call from Janet that Patrick, her husband. had died from MSA, I have been unable to put in writing what I has been going on in my brain. I never met Patrick, and only met Janet after his death. But, the lived fairly close to us, went to the same clinic as Dennis and were purchasing the same equipment as we were.

I suppose that makes Dennis' imminent death more real to me.

I am trying to focus on the stories of those like Marsha's; her husband, Johnny, has had MSA for 9 years and is still alive. We also are starting to plan our summer and fall, and that keeps both of us going.

I will find my voice again. Please bear with me while I mourn this latest loss and learn to move forward once again.

Until later,
Ann and Dennis

Wednesday, March 17, 2010

More on Stomach Issues

Dennis is still trying to figure out all the acid reflux, throwing up and nausea. I thought it was all the same thing, but evidently each symptom is different and distinct.

Yesterday he looked up feeding tube problems on the Internet, and came up with a few solutions that he tried today.

He had the feeding slowed down, but half shutting the valve on the feeder. This was suppose to help with nausea. He also laid down while being fed, and this was suppose to also help with nausea. So when I came home he was in bed being fed. He wasn't nauseous. But as soon as I got him out of bed, he felt the acid reflux hit him.

Tonight we will see about the vomiting. He has an appointment with a GI specialist, but it's a month away. He is completely tired of this, and I can't say that I blame him. I am tired of it, too.

Until later,

Ann and Dennis

Tuesday, March 16, 2010

Love, With Some Dying

Another poem, by Dennis

In the touch
In the Velvet Friction
In the nameless delight
Of the ultimate caress
That empties out in the act
There is a Mysterious pact
In the delirious spasm
Hallucinating heaven
And the hell of a slow dying
We become one when you are mine
And in the instant I am yours.

Until later,
Ann and Dennis

Wednesday, March 10, 2010

Retirement

I turned in my separation papers to Human Resources on Monday. I considered all of the options and retirement was the right decision for me.

I imagine I will work again. But for a while, I just want to spend time with Dennis. We plan to vacation this summer, as always, and then again in the fall. Nothing, other than me, makes Dennis happier than travel. As long as I do not have to go to work as soon as we return from a trip, I will be able to enjoy and relax as much as Dennis.

In between trips, I will have time to write, paint and plan my next career.

Looks like a win-win to me!

Until later,
Ann and Dennis

Tuesday, March 9, 2010

Benjamin Button

Have you seen the Curious Case of Benjamin Button? Other than getting smaller and larger, Dennis seems to be living in this movie.

Today when I came home from work, he was feeling generally crappy. His afternoon PCA had not been able to come today, so he was alone for an hour before I returned home. Dennis was needing attention as soon as I walked in the door.

He wanted his meds. He wanted to go to bed. He said he was nauseous and dizzy. He wanted
everything, and all at once. I talked him into sitting in his lift chair for a while, but within 30 minutes, he was insisting he needed to go to bed. I asked if he could walk, but he needed to be wheeled into the bedroom. I brought over the wheel chair, lifted the chair to upright and began to transfer him.

He missed the chair. The fall was soft, and he didn't hurt himself. But he chose to crawl to the bedroom rather than try to transfer once again. And now, at 5:30, he is in bed, once again, for the night.

Good night, Benjamin, Good night.

Until later,
Ann and Dennis

Sunday, March 7, 2010

March is MSA Awareness Month

I belong to FaceBook and so does Pam Bower, another advocate for patients and caregivers of MSA. Please notice the following message and join if you so desire.

“Miracles For MSA” Proclaims March
as Multiple System Atrophy Awareness Month

(FACEBOOK, WORLDWIDE – March 3, 2010) – There is no Michael J. Fox. Nor a Muhammad Ali or a Lou Gehrig. But more than 1,000 fans—known on Facebook as Miracles For MSA—have proclaimed March as Multiple System Atrophy Awareness Month.

Passionate patients, caregivers, researchers, friends, and family members want everyone to know about this rare, incurable brain disease that combines many symptoms of Parkinson’s Disease and ALS, with cerebellar ataxia and autonomic failure. Multiple System Atrophy, or MSA, affects multiple systems of the body. It’s a disease that’s hard to diagnose. And it wreaks havoc on not only the patient but all of those who love the patient as well.

“Miracles For MSA,” a Facebook page connecting those affected by MSA worldwide, stemmed from a similarly named charity event last March in Nashville, Tenn. It brought together Pittsburgh Steeler’s Cornerback Fernando Bryant, a promising genomic research initiative, a Michigan life science startup, and Vanderbilt University Medical Center, to raise money for life-saving MSA research. The idea for MSA Awareness was sparked by Bryant’s former basketball coach, Bob Summers, on the Miracles for MSA Facebook page. Summers’ wife suffers from MSA.

“MSA is so rare that many cases are wrongly diagnosed as Parkinson’s or some other similar disease,” said Pam Bower, an active member of the Facebook page, who’s mother-in-law was afflicted with MSA. “My hope with the MSA Awareness month is that the worldwide MSA community will feel more united and will be inspired to do more to raise the profile of this disease and to raise funds.”

Multiple System Atrophy encompasses disorders previously known as Shy-Drager Syndrome, striatonigral degeneration and sporadic olivopontocerebellar atrophy.

Currently, The Shy-Drager Syndrome (SDS/MSA) Support Group, a growing legal entity devoted to fostering an ongoing relationship between patients, caregivers, their family members, and medical professionals, is one of the most sought-after resources for those dealing with the disease. By declaring March Multiple System Atrophy Awareness month, organizers hope to take awareness and fundraising one step further, bringing this and other groups to the forefront of awareness collectively.

According to the National Institutes of Health, “Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by symptoms of autonomic nervous system failure such as fainting spells and bladder control problems, combined with motor control symptoms such as tremor, rigidity, and loss of muscle coordination. MSA affects both men and women primarily in their 50s. The disease tends to advance rapidly over the course of nine to 10 years, with progressive loss of motor skills, eventual confinement to bed, and death. There is no remission from the disease. There is currently no cure.”

The group is creating a website that will be open to all MSA organizations worldwide, a resource for all MSA connections. The website, msaawareness.org, will be live mid- to late-March.

For more details about Multiple System Atrophy please see the National Institutes of Health MSA factsheet at ninds.nih.gov/disorders/msa/detail_msa.htm.

To join the “Miracles for MSA” Facebook page, visit facebook.com/pages/Miracles-for-MSA/138909258573.

“Miracles for MSA” is a worldwide group of individuals dedicated to spreading awareness about this disease and inspiring hope for a treatment through fundraising, education and research efforts. The group encourages all worldwide organizations with an interest in MSA to join in its efforts to spread the word about MSA and to inspire the miracle of research that will one day lead to a cure.

Saturday, March 6, 2010

G.E.R.D.

I took Dennis to his doctor Friday. Dr. Kiefer is his general practitioner, and Dennis has been seeing him forever. We both really like him - he is a great listener, and he genuinely seems to care for his patients.

Dennis is still struggling with GERD - or at least that is the label we are giving his acid reflux and night time up-chucking. He hates the taste in his mouth, and I worry he will choke on his vomit while he is sleeping.

He has tried several different medications all of which are trying to prevent acid build-up. Nothing has worked so far. The doctor prescribed a new type of medicine that is meant to help the flow of food, so he is able to empty his stomach easier. He started using it yesterday, he threw up last night and again today. We will give it a week, but it seems that this isn't the solution either.

Next we will try a GI specialist. Hopefully something will work for Dennis.

Until later,
Ann and Dennis

Thursday, March 4, 2010

Poetry, by Dennis



Before


to all the ones who went before me

to all who know the path

those who saw the shimmering light

those who broke the glass

the ones who lied like syrup

the ones who held the truth

the ones before now

are the same as me and you



by Dennis Cote

March 4, 2010