Morning Laughter

Dennis and I have always enjoyed our mornings, together. Very few days start out without a morning song sung by each of us. Some days we sing a real song, other days we make one up that just seems to fit the moment. We also like to make each other laugh out loud before anyone gets going on the day. It may be a story, our silly songs, or a gentle tease.

We are allowing Shiva become part of this morning ritual, too. This morning, I helped her up on the bed to join us in our trying to wake up, weekend morning, laughing out loud routine. She is a nut job. She starts out by wiggling her way into Dennis armpit, and then licking and tugging on his hair. Then she begins jumping at our feet and fingers under the duvet. Dennis and I both bursted out laughing at her shenanigans.

I love starting my mornings in this way. Regardless of what takes place for the rest of the day, we always have mornings that commence with enormous laughs and joyful hearts.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and lots of laughter

Back to School; All is Well

This time last year I was already entirely stressed out about work. I had just started a new position at a new school and the atmosphere was a mess. Two schools had merged together over the summer, a new principal was placed there, and there was no district help to coordinate all of the changes. The new principal considered me "administration", and said so at a meeting. This put me in an awkward position with other teachers, since I regarded them as my peers.

The first time I was introduced, I was expected to talk about my philosophy regarding behavior management. I did as requested, but the message was not well received. It appeared that no one wanted to hear any positive messages in what I had to say. They nit-picked apart every other word that came out of my mouth. I went home from the first 5 days of school, completely exhausted. The worst part was, I hadn't even met a child, only adults.

Throughout all of this new job stuff, home was getting demanding. Dennis had gone from a cane to a walker. He also had to quit his very part time job, under doctor's orders. We had also embarked on the long, frustrating, and quite stupid process of applying for social security disability. The urine problems had started, and diapers and bed pads were not consistently keeping the bed dry at night.

I remember coming home on Friday of that first week and falling into bed.

The start of this school year is considerably better. The staff at my school has bonded and people trust me. Today, I gave a 3 hour presentation on the school-wide behavior plan, and I received only praise and thank-yous. Even the few controversial parts of the plan did not receive any out-loud complaints.

Dennis, as I have been remarking on this week, has stabilized. We finally know what we are dealing with, and therefore, are we better equipped to deal with the day to day functions. We have hope that Mayo will be able to offer us even more positives than we are experiencing right now.

All in all, I have high hopes that we will have a good year, both at school and at home.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Parkinson's Plus and hopes for a great year ahead

Update on Shiva

Shiva is turning out to be a great little kitty. She is cuddly, likes to be man-handled, and enjoys playing with or without us. That she is also cute, is just an added plus.

She has been nice company for Dennis. She hangs out in his room much of the day, and loves to be in bed with him after I get up for my shower. She entertains both of us with her chewing on the feather toys and chasing silly balls. She is a much needed distraction from everything else in life.

She has also doubled her weight, since we adopted her. Now, when I get out of bed, she runs back and forth from her dish to me, while I make my morning coffee and get her breakfast ready. When I return home from work, she runs out from her sleeping spot to me and then right to her dish.

Hey, wait a minute! Didn't I say, only a few short weeks ago, that Dennis would be the one to feed her? Moreover, wasn't I the one who really does not like cats? She has not taken over the house, yet, but she sure has a way of winning over even the most hard hearts. Mine has been sure softened up.

Maybe I am an old softie, but I still hate when someone figures that out. Even if it is just a cat that knows my inner self, I still don't like it!

Until Tomorrow,
Ann and Dennis and Shiva, the Diva

Life Can Be Dull

Dennis and I have both been dreaming very active dreams, lately. Nothing exciting to relate to anyone, but they are very active dreams. They are also loud, and at least for Dennis, very full of violence.

I imagine both of us are fighting back against something we don't like. Whatever the reason, I know that I would not be a happy camper if I was in the room next door. I have put on a recorder at night, and between both of us snoring and Dennis' yelping, we could wake the soundest sleeper.

Dennis has a mild narcotic he takes at night, but it only seems to last for about six hours. Unfortunately, he sleeps, loudly, much longer than six hours. I know the next time we see one of his many doctors, we will need to discuss this problem. Now that I have returned to work, I really do not want to be woken up at 2:00 in the morning.

I know this is a dull read for a daily blog. I also know there is a reason to celebrate the dullness in this blog lately. Everything is going great, at this moment. Dennis seems stabilized. There have been no real troublesome new symptoms, and nothing new has happened for some time. We have found coverage for when I am at work, and it seems that is turning out to work okay, too.

So today, I celebrate the dullness of life.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Celebrating Dullness

A Good Start to the School Year

Monday, I returned to work. The start of a new year changes year to year. Some years are all about meetings, other years a teacher actually has time to set up. School staff changes regularly, and we have a week together, before kids, to bond. The mood for the entire school year is set throughout this first week back to school.

I arrived at school about 15 minutes before our duty day began. In the course of that time, at least 10 people asked about Dennis. I decided, if the occasion came up, that I would merely tell the staff about the diagnosis, the prognosis and let them know about my taking time off during the school year. Given that last year was not the most friendly working year of my school career, I did not expect many positive remarks. My best case scenario, if given the chance to divulge, was, in my mind, ambivalence.

The opportunity did arise, and I let staff know what was up and what my plan was for the year. I was amazed at the eye contact and head nods that were given in my direction.

One of the toughest staff members approached me on Tuesday, and gave me a huge hug. She told me that I said something powerful, about not letting work stand in the way of being with the man I love. Another teacher, telling me about a former student who is really ill, told me she knew that I would understand the needs of the family. My boss, whose daughter is severely disabled, cheered with me as I let her know that a PCA had shown up, on time, two days in a row.

Perhaps, at times, I let people know too much. I imagine it makes me vulnerable. At the same time, I believe, when you open yourself up, others rise to the occasion. There are those who will never care, or understand. I can't spend my energy worrying about them. I am only able to focus on what is pleasant in life, and today, the people I work with lightened up my life.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and many supporters

The Answers

My first day back at work, and all is well, both at home and at work. I got out of bed on time and Raquel showed up for work on time. I was able to relax at work, and really do my job. When I came home, Dennis was sitting upright and there were no messes on the floor.

I actually have no complaints. Instead, simply the answers to yesterday's test.

1) Shy-Drager (the name the Mayo Clinic uses), Multiple System Atrophy (the name used by non-researchers), or Parkinson's Plus (the name used by Parkinson's doctors)

2) Orthostatic Hypotension (which seems to be under control at this time)

3) Shiva (the Diva)

4) Raquel (who has improved tremendously in being on time and responsible)

5) Dysautonomia (basically means no automatic)

I know, this is a cheap way to fill two days in a daily journal. But after lolling around half of the day, I had to be good to myself upon returning to work. Today, you, my faithful blog readers, are the ones to live with my laziness.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Parkinson's Plus or Multiple System Atrophy (take your choice)

The Promised Test!

I was thinking since I must return to teaching today, it would be a good time for one of those tests I have been promising. Since this test is on your honor, feel free to peruse old posts for answers. Spelling counts, but no deductions will be taken for using spell check.

Have fun! Answers will be posted tomorrow.

1) Give at least one name for the disease/syndrome that is plaguing Dennis.

2) What is the medical term used for explaining sudden loss of blood pressure upon standing?

3) Name the newest member of our household.

4) Who is Dennis' primary care-giver when I am not around?

5) What is the term for automatic systems shutting down?

Oh, that's enough for a pop quiz.

Have a great week, all my faithful readers. I will continue to write each day.If I miss a day, I will make up for it on the weekends, as I did on yesterday's posts.

Eyelids

How many parts of our body do we take for granted? I never have given much time or effort to thinking about how the body works. I have come to realize that many functions of our body are so automatic, that we seldom have to consider any of them.

Okay, we have all had to deal with occasional constipation, and even Bob Dole has dealt with erectile dysfunction. I have had high blood pressure issues, myself, but low blood pressure, let alone orthostatic hypotension was a big new one to me. Of course, I know that some people leak pee during the day, but who would have thought of the body just refusing to pee?

Now the latest development arrives. It's the inability to open eyelids after waking. What? Today, it took Dennis 15 or 20 minutes to open his eyes. I asked him about blinking, and he told me that once his eyes start working, they seem to be okay for the rest of the day. I imagine it is only a matter of time.

How much of our daily movements and actions are automatic? It seems I have yet another issue to investigate.

Until Tomorrow,
Ann and Dennis
Living with MSA, SDS, and dysautonomic diseases

Little Inconveniences

The elevator in our new condo has not been working well. It must be a used elevator, because the building is brand new. It started rocking and rolling and making loud noises a month or two back. Now it just completely shuts down on a frequent basis. It is only 2 1/2 stories, 3 1/2 if you count the garage, so it's no hardship to walk up to the condo. However, when you are carrying a wheel chair, and then have to go back down the steps and help a guy, who has been falling once again, it does become an inconvenience.

We went out for breakfast this morning. There is a small breakfast and lunch joint near us that we have not tried before. The food and service was great, but it was so difficult to get the chair through the restaurant. We had to ask people to stand up, reposition their chairs and move tables that were in our way. It's really no big deal, and probably more of an inconvenience to others, but it's still something that we need to consider.

There are so many big issues in this world, and even in our own tiny little world, I hesitate to even think about this topic. Nevertheless, it does exist, and when added up, a bunch of little inconveniences become a bigger issue.

One of these days, I may start up a fight for the rights of the disabled. At the moment, I only have the energy and time to make life as great for the two of us as is possible. I think I am doing a pretty good job of that, by the way.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and small inconveniences

Frustration Today

I am not a happy girl, today. Dennis has not been sleeping well lately, and I guess that means I don't sleep well either. This morning, at 4:00, he was awake when I got up to use the bathroom. He announced, when I returned to bed, that he was not going to the Struther's Clinic today for group. This was not news a girl who likes her full eight hours of sleep wants to hear three hours before she wants to wake up.

We had a talk a few hours later, after I watched a silly On-Demand TV movie and had my earlier than usual cup of coffee. He has this feeling that I fall asleep on a dime. What he doesn't understand is that only works as long as I am mindless. When my mind is all full of new and unwanted information, I am awake for ever. Handing me the news that my plans have been suddenly changed because of his whim of the moment, does not bring back my sleep.

I am tired. Perhaps I will catch up tonight on my sleep. Perhaps, one day, we will figure each other out.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and too little sleep

Leaning and Tipping

Dennis' body leans to the right. His leaning is why he fell out of the chair last weekend and slashed his face. I spend fair amount of my day just pulling or pushing him back to an upright position. We are constantly working on new methods to keep him vertical.

We have tried packing pillows around him when he rests on the couch. This works momentarily, but then the pillows start squeezing out or scrunching up. Soon he is all tipped over once again.

Some days I simply sit really close and push him when he starts leaning. Dennis always comes back with a petulant child's voice telling me to "quit pushing." We laugh, and then I shove once again. I rather enjoy this routine.

My ever growing hips and butt also come in helpful for fixing the tipping issue. When he gets into the car, I push his behind with my own rear end, to help him to move over in the seat. Then I buckle him in, and he sits upright for most of the trip.

I have taken to tying him in a chair with the cloth of love that Dennis bought in Hong Kong back in his working days. It's soft, wide, and serves it's new purpose, but he continues to tip anyway.

Now he is starting to lean over in bed. We lay down a pad on the bed, so I can do repositioning easily. I pull him over towards the middle of the bed at night and up towards the top of the bed in the morning when he sits up. However, this pad is not very helpful for his leaning over and almost falling out of bed.

This morning when I woke, his body was bent at the waist, and his head was hanging off of the bed. I pulled his shoulders back, but it didn't last long. A few minutes later, his head was off the bed again.

We will find even more workable solutions to this leaning problem. We have solved so many other inconveniences previously. We are both good problems solvers, a necessity it seems, in living with Shy-Drager.

Until Tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy-Drager, Parkinson's Plus and solving problems.

A 30 Minute Appointment

Nothing is ever speedy, when it comes to Dennis. Today was catheter changing day at the doctor's office. The appointment was for 1:00 and we were prepared to leave at 12:30. Even though the office is only 10 minutes away, getting Dennis in and out of the car takes a while. All was well, until, the Miralax kicked in.

As I have mentioned before, one of the automatic systems that has shut down is pooping. That's where Miralax enters our lives. It works adequately, but it also works at inconvenient times. Today, it started working on the system just at the time we were set to leave the house.

We were 30 minutes behind, but the nurses there are unfailingly understanding. I imagine you get used to this sort of thing in the urology department of a hospital. He was taken in almost immediately, and returned about 20 minutes later. We made an appointment for next month, started wheeling and walking out, when Dennis began to feel woozy. Consequently, it was back into the office and laying down with the blood pressure monitor on his arm. We were off, once again, 30 minutes later.

He wanted to have some links taken out of the latest watch he had bought for himself for his 60th birthday. We drove down to the shopping area near us, when the Miralax came through for a second time. We stopped in a restaurant, and I had a beer as Dennis disappeared into the men's room for the next 60 minutes. We left the restaurant only to stop in the next place down the line for another 45 minutes. W finally returned home, from a 30 minute appointment, 5 hours later.

It seems these days, I am given so very many opportunities to practice my patience. Aren't I one lucky gal?

Until tomorrow,
Ann and Dennis
Living with Parkinson's, Multiple System Atrophy, Shy-Drager and tons of patience

My Parents

Last Friday, Dennis and I met my parents in North Hudson for lunch at a nice Italian restaurant. We have met for lunch several times this year, half-way between each of our homes. We don't live that far apart, less than a two hours drive. Still, these days, shaving off an hour or two on a round trip is easier for all of us.

When Dennis and I were in Paris, mom and dad were taking a walk, when mom tripped and fell to the ground. Mom has never been full of grace, and has fallen before. This time, though, she broke her arm just above the elbow and her front teeth chipped and pushed through her upper lip. Naturally, it was her right arm that broke, and she hasn't been able to do tasks skillfully with her left arm and hand.

Now it is eight weeks later, her cast was off, she has completed some physical therapy, her teeth are fixed and there is only a tiny bruise remaining on her lip. She looked good and could eat her entire meal.

It's fun, and often interesting, getting together with my parents. My mother's and Dennis' lives seem to parallel each other at times. My father and I are going through the same sort of issues, too. We all get frustrated with our partners in different ways, but there is so much empathy and understanding among all of us.

I am fortunate to have both of my parents still alive and reasonably healthy. Dennis thinks of them as his own parents, and loves them unconditionally, as I do. It's good to have family.

Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and loving family

Returning Home

I heard that itty bitty voice talk to me again this morning, the one I always listen to carefully. It said, "come home from the lake earlier that mid afternoon." So after our morning coffee and gaze at the lake, I packed up the car and drove the hour and 15 minutes to return home.

As I came in the house, Raquel said to Dennis, "you got some 'splainin' to do, man!" With a curious look on my face, I put down my bag and strolled over to the table where she and Dennis were sitting. I asked, " What's up?" and Dennis told me he had fallen down once again. I gave his body the once over, and all I saw was the usual ketchup stain on his face.

After the story came out, I found out it wasn't a ketchup stain, but rather a gash and seven stiches.

He has an office chair that isn't sturdy or strong. He insists in keeping it, even though he has tipped over before, while sitting in it. This time when he had tipped over, he hit his face on the metal plant stand holding his new pot of succulents. He had cut his face on the edge of the stand. As if that wasn't humiliating enough,the pot of cactus then fell on top of his head and gave him a small bump on the noggin'.

All this had happened just hours after I left our flat on Friday, to cash in on the weekend away that Dennis had given to me for my birthday. After Dennis and Raquel ate dinner, Dennis fell. They took a taxi to the emergency center at his regular hospital a mile away. Because it was both a Friday and a full moon, they ended up waiting until the wee hours of the morning to have the large gash stitched together.

Bless him, once again. Raquel wanted to call me and Dennis said no, he did not want to spoil my weekend. Neither one of them said a word when I called home to check on them.

The chair is in the garbage, the carpet now has blood and dirt stains, in addition cola, food and wine stains. I imagine replacing it now would just be fool worthy. Soon, we will probably be able to pass it off as a pop art carpet. It may turn out to be worth some big bucks, one of these days.

Don't Worry

Don't worry, be happy.

Remember that song from way back when? Bobby McFerrin created a pop hit from these simple words, and later became creative director for our very own Saint Paul Chamber Orchestra. He also gives me the courage to skip two days of writing, as I tell you all:

Don't worry, I am okay today. I am just not writing because I am out playing with my girl friend. In addition, while you are not worrying about us, you might as well be happy, too.

See you in a few days.

Ann and Dennis

Living without worry, and lots of happiness

Picture and A Story Friday

Dennis and I both come from small families. This is a picture of most of the Cote side of the family. Present are his niece Caroline, who is about to hatch in December, his sister and brother-in-law, Donna and Louie, and the two of us.Missing are his niece, Katie, and Caroline's husband, Stuart.

Family. You really don't want to live with them, but you sure can't live without them either. Dennis really appreciated this visit by his sister's family. Even though we can spend time with most of my family quite often, it's different than spending time with your own flesh and blood.

We chuckled as Dennis and Donna shared stories about growing up. We shared a few belly laughs over a story about Louie's first experience with Chili Con Carne when Donna, and he were first dating. Caroline and Dennis relived some game called 'bad mommy' that was played when Dennis baby-sat for the girls.

We had a nice visit, and have a few more memories to reflect upon over the next few years.

Ann and Dennis,
Living with Shy-Drager, Multiple System Atrophy and two loving families

The Mayo Clinic

Dennis' cell phone rang this morning while he was still in bed. I don't generally answer this phone, but an itty bitty voice in my head said, "pick it up." I always listen to that voice when it calls. It turned out to be the Mayo clinic calling, wanting to recruit Dennis for some new research they are conducting on Shy-Drager.

From a forum that I peruse occasionally, I knew the Mayo was doing research on dysautonomias (who remembers that word?), but now we found out, they are doing specific studies on Shy-Drager. Someone at the Mayo had found Dennis' name from his inquiry about the study of a new drug to control blood pressure concerns. Now, it seems, they are keen on using him for additional research studies.

This has the potential of being truly great news for him. We don't know where any of this might lead, naturally, but I do know the phone call lifted both of our spirits. At the very least he should receive an extensive exam by a specialist in Shy-Drager. Better still, perhaps some new drug that treats his symptoms more effectively. Truthfully, I am still holding out for a reversal of fortunes and a sudden cure. Now wouldn't that be loverly?

More news to come! And, don't forget the vocabulary test coming soon. Spelling will count!

Until Tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy-Drager Syndrome and Hope

My Birthday Present

Dennis is giving me a very unique present for my birthday this year. He is giving me a weekend away with my girlfriend, Melinda.

Melinda owns a small cabin on a beautiful Minnesota lake. When we get together, we spend most of our time laughing and playing. I usually go there once or twice a summer, but this summer I knew I would not be able to get away. Her cabin is down a hill, over grass and rocks, and Dennis would not be able to reach the cabin with either his chair or walker. Of course, I could not leave him alone.

Then last Friday, when I went into his office to write out a check for Raquel, the two of them presented me with a plan. Raquel would work from 8 AM until 8 PM on Saturday, and then return on Sunday morning. I could leave on Friday night after I helped Dennis get into bed.

Thank you, Dennis, for one of the best birthday presents ever. You are one special guy, and I love you like crazy.

Until Tomorrow
Ann and Dennis

A Family Visit

I was just a tiny bit anxious about Dennis' sister, Donna, visiting us. We haven't seen his family for two years, and that was at Caroline's wedding in Boston two years ago. At that time, Dennis was still able to dance, if the song was slow and short and I led. He has changed dramatically since that wedding day in the fall.

Now pregnant, Caroline joined Louie and Donna on the drive from Chicago, Caroline's home, to Minneapolis to visit with Dennis and me. They arrived a few hours later than planned, and much more tired than they anticipated, so we kept it low key. We took the scenic route to Minnehaha Falls, and walked for some time. The three of them walked up and down the stairs for a photo opportunity, and then we headed back to our flat.

I let go of any anxiety by the time we arrived back home. No one had pulled me aside to ask me quiet questions. No one had given hidden side glances or small looks of pity. In fact, it seemed, everyone had their own lives to discuss, not just Dennis' tale of woe.

After a delicious dinner, lots of laughter and sharing old family stories, Dennis and I were left to reflect on the day. As we sat on the deck, sipping the last of our wine, I realized, once again, that we are not the center of everyone's world. No matter how Dennis is doing in his struggles, life does go on and on. Life is a wonderful gift, a gift to be cherished and enjoyed. Yesterday, we did both.

Until Tomorrow,
Ann and Dennis
Living, happily, with Multiple System Atrophy and Shy-Drager and family

Dinner Time

Whoa! I just went back and read my last few entries, and I must say, I was bored. Where did my sense of humor go? Time to find the light side in everyday life, Ann.

As I have mentioned previously, Dennis is not a tidy eater. He not only spills on himself and the floor, but he also has a great knack for knocking plates and glasses over. He has already ruined the carpet in both bedrooms.

Dennis prefers to eat dinner in his office while playing on the computer. Did I ever mention that I keep establishing all these directives that everyone, including me, continues to ignore? We do have a rule that Dennis only eats at the table, which sits on worry-free wood floors. Still, I continue to bring his food into his office, and he continues to spill on the carpeting.

Last night, as he ate, once more, in his office, he dropped some green beans on the floor. It seems that Shiva, the kitty, and Dennis, the slob, had a fight over the green bean. At least they both like my cooking. Later, while he was eating ice cream, Shiva was attempting to climb into the bowl. Naturally, the bowl tipped over. The party began as the two of them competed over who would get at the milky mess first. I am not sure who won, since I was sound asleep in the other room. At least I wasn't hearing, "Aaaaaaaaannnnnnnn."

Shiva must have won at least some of the food battles. When I woke up this morning, she ran to her dish and began to yell at me in her oh, so endearing manner. When I picked her , I noticed she had a bit of garlic breath. The beans were smothered in garlic butter. Not a big problem, however, since garlic is supposed to be healing, and she does have a bit of kennel cough that she caught at the animal shelter.

When Dennis asks me what we are going to do today, I will hand him the Resolve, a sponge and the vacuum cleaner. Hopefully, he will get the message.

Until Tomorrow,
Ann and Dennis
Livng With Multiple System Atrophy, Shy-Drager, Parkinson's Plus and dirty carpets

Bitter and Sweet

We have been working on finding people to be with Dennis when I return to work, in two weeks. I am really, really not ready to be back at work. The upside of teaching is having the summers off. The downside, it appears, is the necessity of returning to work. Ah, the bitter and the sweet of my job.

We talked with a company on Friday that provides personal care attendants for the disabled and elderly. The sweet side of using a company is they do extensive interviews with the people the employ. They promise a good match and provide a guarantee that the attendant will be reliable and timely. The bitter side is the price you pay for such a service.

I was hoping to find someone to come in for the first two hours of each day, to get Dennis showered and dressed. Dennis would then have JoAnn, Raquel or Club CREATE to keep him company for the rest of the day. I would be here for the late afternoons and the evening.

It looks good on paper, but does not look good when you start adding up the numbers. It would cost us over 80 of what Dennis earns from Social Security Disability. Yes, I would feel comfortable during the day knowing Dennis is safe, secure, and with people that he enjoys. No, we would not be happy spending two grand a month on care.

We will figure all of this out. We will find a solution that keeps everyone happy. We will find the sweet in all of this.

Until Tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Parkinson's Plus and Shy-Drager

A Busy Week Ahead

This upcoming week is filled with people, places and events. Monday and Tuesday, some of Dennis' family are arriving from Chicago and Massachusetts. Wednesday I turn 56. Such a big number! Thursday some friends are coming over to see the new condo and Friday, we are meeting my mom and dad for lunch in Hudson.

I return to work soon. I have been working hard to get a schedule together to ensure Dennis is safe everyday, and I can return to work with some semblance of peace. We both love Raquel, but she is not, and will never be, responsible enough for me. We are interviewing with an agency to find someone that will be available for Dennis at least 3 mornings a week. We will then add in Raquel, my friend, JoAnn, and Club CREATE, at the Parkinson's clinic, to keep him company for the remainder of the day.

I hate taking away Dennis' freedom, but I know that I cannot hold a job, effectively, without knowing that Dennis is safe, secure and happy during the day. He would prefer having time alone, but we just can't afford that anymore. This has been difficult for both of us, but mostly for Dennis. I don't know how well either of us have accepted any of this. Maybe we never will.

Until Tomorrow,
Ann and Dennis
Living, and struggling, with Parkinson's Plus, Multiple System Atrophy and Shy-Drager

Picture and A Story Friday

Here she is, our new little kitty, Shiva.

I mentioned last week, that I had put my big old cat paw down, and we would have rules in our house. I was going to be top cat, and our new adoptee, just a welcome addition. Who, in the right mind, allows a 2 pound feline be the boss?

Me, I guess.

Shiva did not want to eat the first day, so I bought her some canned cat food. Rule one broken. Dennis doesn't get up early enough to get her morning food out, so I do. Rule number two broken. I am beginning to wonder if any of my rules and decrees will be followed. I guess I am just tough on the outside and an old softy on the inside. I hate when that happens.

Fortunately, Dennis picked a nice kitty. She's friendly, likes to cuddle and plays, independently, with all of her new toys. I had fears of her not knowing how to use a litter box, but Dennis was right. He told me cats wanted to be clean and tidy, and Shiva would not make messes outside of the box. She has not.

Unfortunately, I have either developed an allergy to her, or I have a summer cold. I am hoping it is not the former making me sick, and I won't need to take another pill everyday. Our bathrooms already look like we could stock a small pharmacy.

Until Tommorow,
Ann and Dennis and Shiva
Living with Multiple System Atrophy, Shy-Drager and Parkinson's Plus

Today

I am not quite sure what is going on right now. Dennis usually wants to get out of the house at least three times a week. It isn't all that important where we go, or what we do, it is more about the going and doing. Lately, he doesn't seem to want to do anything.

He has been complaining that he feels spacey, recently. When I ask him to define that, he just says his brain doesn't seem to make connections. He feels his cognition is off, in one way or another. This scares me.

Dennis is a extremely intelligent guy. He has an uncanny capacity to analyze information and make sense of things that mean nothing to me. Truthfully, we complement each other intellectually. I am more of an abstract person, and he is more of a factual person. It leads to some fun, and entertaining discussions.

I am hoping this is a temporary phenomenon. I am not sure how I will deal with life if Dennis is losing the part that I adore the most - his thoughts.

I have nothing else to say today. I am tired and frightened.

Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Parkinson's Plus

Clinical Trial

Dennis signed up for a clinical trial for a drug being tested right at this moment. It seems this new drug has been used successfully in Japan for 18 years to control orthostatic hypotension. It is anticipated it will be available sometime next year, here in the US.

For those of you who did not practice your new vocabulary words, orthostatic hypotension is the extreme drop of blood pressure upon standing. This causes syncope, fainting, and is one of the more life-threatening symptoms that comes along with the diagnosis of Multiple System Atrophy.

Dennis is currently taking the drug midodrine to control his blood pressure difficulties. While this drug has managed most of the fainting issues, it also keeps his blood pressure fairly high all of the time. This causes a new set of problems such as the possibility of a stroke or heart attack. Sorry, if you are a constant reader, you have heard all of this before. As a great teacher, however, I know that repetition is important.

This new drug, droxidopa, appears to be safer and more effective than midodrine. Maybe it will control the ups and downs of his blood pressure without adding any new symptoms. Maybe it will stabilize his blood pressure for just a little while.

We are still counting our blessings. Changes have slowed and we are happy. At the same time, we will continue to look for new drugs and treatments that will make his/our life as full as imaginable.

Vocabulary

A few years back, I had a myocardial infarction, or a heart attack. Since then, I have learned how to advocate for myself and others, by learning what questions to ask doctors. I have found that unless you ask the right questions, doctors may not tell you much at all.

A year ago, Dennis' regular neurologist lightly hinted at the fact that he may have something more than simple Parkinson's, but never gave it a name. We started calling it Parkinson's plus, for lack of a better term, never knowing that this was a real diagnostic term.

As we were preparing to move Dennis from the hospital to the nursing facility this June, we were handed a pack of papers in a sealed manilla envelope. We were told to hand it over to the charge nurse when we arrived. Ya, sure. We were going to do a complete read through before we did any such thing. This is how we learned about Dennis' diagnosis of Shy-Drager.

I am not here to lay blame. I don't pretend to know why doctors tell or do not tell a patient certain information. I am sure that they are looking out for the best interest of the patient. I know that diseases/syndromes of this type are difficult to diagnose and can be easily mis-diagnosed. Perhaps malpractice suits have a part in this matter. Perhaps, it is merely, they do not know.

I am here, today, to share a two new terms and words that I have learned these past few weeks. As long as my vocabulary is getting bigger, yours might as well, too.

Syncope: a spontaneous loss of conscienceness caused by a lack of blood flowing to the brain. We lay people call it blacking out, passing out or fainting.

Dysauntonomias: conditions where the "automatic" (autonomic) nervous system is harmful to your health. I have found that there are many syndromes under this group, Parkinson's and Multiple System Atrophy are but two. In some people, one or more autonomic systems break down, such as a pulse rate. POTS is an example of this type of dysauntonomia. In rare situations, multiple systems shut down, which is what Dennis is experiencing.

Ah, I suppose we have learned enough for today. Prepare for a test later, though. Oh, a spelling test and a vocabulary test are both in order, I believe!

Until Tomorrow,

Ann and Dennis
Living with Parkinson's, Parkinson's Plus, Shy-Drager and/or Multiple System Atrophy
(and now, we know, Dysauntonomia)

Cats and Dogs

Dennis is a dog. A big, cuddly, playful puppy dog. He begs in the sweetest way, for treats and attention. It is hard to turn him down for even the silliest of requests.
I am a cat. A fierce, large, and stand-offish cat. You do not offer me treats or attention, I take them when I need them. I am not cuddly, but I am strong and protective of those I love.
I love dogs and Dennis loves cats. I guess that is why we do so well together. We are not alike, but we are attracted to the personality of the other. We each hold tight to our internal ways of being, and admire the different qualities that we each bring to the relationship.
Today we are going to the humane society to see if we can find a kitten for Dennis. He has been wanting to get a kitten for a long time. I would rather have a puppy, but I have enough to take care of right now. Actually, I would rather not have a pet of any kind, but sometimes you just have to give in to the wants of your partner. Consequently, it's a kitty that we will look for today.
We have set the ground rules already. No canned food sitting in the fridge, only hard cat food. The cat box will be in his office, not sitting in the middle of our big, open condo's great room area. Dennis will be the primary care giver for this new addition to our family. He will feed the kitty, clean the cat box and take care of it's day to day needs. I have put my large cat paw down!
I believe it will be healthy in so many ways for Dennis to have something to take care of and play with while I am gone. He loves attention, but not too much, and a cat just might fit the bill.
Until Tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Parkinson's Plus and Shy-Drager

Looking for Answers

When Dennis was diagnosed with Parkinson's four years ago, we searched to find helpful sites, with answers, on the web and from his doctor. Of course, Michael J. Fox and Mohammed Ali's sites came up as we searched the web. We talked to doctors, nurses, friends and social workers and found we were doing everything that we could. We could treat the symptoms of Parkinson's, but we could not beat the disease. He would live a long time, but he would always be inflicted with this disease.

Now, we are searching for information on Shy-Drager, Multiple System Atrophy and Parkinson's Plus. There is less information, more bewildering than before, and none of it brings any sense of relief. The Internet and the doctors all say the same thing - treat the symptoms and the prognosis is not good.

Actually, I guess, the answer is right in front of us. There is no cure. We can treat the symptoms, a bit, but we cannot change the disease/syndrome. Perhaps we should stop trying to find answers that simply do not exist, and focus on living our lives to the fullest.

Until Tomorrow,

Ann and Dennis

Living with Multiple System Atrophy, Shy-Drager and Parkinson's Plus

Friday, A Picture and A Story: The Eiffel Tower

It's Friday, so it's a picture and a story day. Today, I give you the Eiffel Tower story.

We have all seen it before, but there is something very special about seeing it in the flesh. It simply takes your breath away. I am only sorry that any pictures I provide will not convey the real emotion behind the view. Instead I offer a Dennis and Ann story for your enjoyment.

It was a down right hot day in Paris when we visited the tower. We had been on a hop on, hop off tour bus to see an overview of the city. We could not hop off easily, there was no lift for the chair, so we just rode the entire route and then popped off at the Eiffel Tower. We walked around and viewed it from all sides first. Soon, we realized that there was no way that we were going to que up for an hour or two, just to ride to the top, so we walked and wheeled across the bridge to view it from afar. I captured a full sized tower from this vantage point.

We had been arguing a bit about what we could not do on account of the chair, (I was not hauling the chair up 100 steps to see a museum) and I was in desperate need for a bathroom. We stopped fighting and walked along the Seine until we found a restaurant. We ordered 2 gin and tonics, and a small appetizer to get us by until we found a place to eat. We were both still a bit crabby, so we pretty much sat in silence, just trying to enjoy the view and the cooling drinks.

When we were finally ready to move on, we asked for the bill. 70E! We had just drunk our first, and our last, 20E (30 dollars) gin and tonic. At that point, Dennis dove into the olive bowl that he had been ignoring and ordered me to put the 3 pieces of bread remaining into my purse. We were comrades once again, and laughing at ourselves and our situation.

We all get taken at one time or another during a vacation. This time, we had managed to find a restaurant that the likes of Thomas Jefferson and Pablo Picasso had at one time visited. Sometimes you just pay a bit too much for ambiance.

Until Tomorrow,
Ann and Dennis