As I have mentioned before, Dennis takes quite a long time getting out of bed in the morning. First he wakes, and babbles for a while. Then he asks me to turn on JAG, our morning TV choice ever since I have refused to watch television news. Slowly, he opens his eyes, after some rubbing and dabbing and more rubbing. By the time I have made my coffee and taken my shower, he is usually eager for his morning Boost.
The procedure to get him ready to begin the swallowing process is a whole story in and of itself. First I need to adjust his head to center, then I pull him up by the shoulders to sit up in bed. I have tried to just let him sit there, but he quickly falls back into the pillows, making it necessary to start all over. Consequently, I am obliged to hold him up as I stuff all of the pillows on the bed, under his back. Some days I get it just right the first time, but usually I need to hoist him once or twice to rearrange the pillows. Sooner or later, I get it right, and he is ready to consume the Boost.
By this time, my coffee is cold (I reckon I should start making it later), so it's off to the kitchen for microwaving coffee and collecting the Boost and a bendy straw. If I am having a lucky morning, the pillows have held up against his body and his eyes are still open.
There is more, but what I want to share here, is we purchased about 10 extra minutes of time today. I've been thinking about getting one of those book/TV bed bolsters for some time now, but they are not available just anywhere. Today, we found our way to one of those bed and bath stores, and invested in a nice fat one for Dennis. The first ones we found were pink with big flowers reminiscent of the 70's. I imagine they were made for a girl's dorm. All I knew is that not either of us were prepared to make that much of a design sacrifice. We finally found the right one; firm construction, but with a soft fabric, and a solid burgundy that will not clash with the rest of the bedding.
One day I will share the balance of the morning with you, but for now, I am simply anxious to use my extra ten minutes to enjoy hot, morning coffee.
Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a new time saver
Tuesday, September 2, 2008
Monday, September 1, 2008
A Bit of This and A Bit of That
Tommorow Dennis is going in for a swallowing video session at the hospital. I am imagining a camera going down the throat to see how well he swallows. I think I will pass on watching that video.
The new eye drops seem to help the saliva issue quite well. Once again, however, the side effects are rather troublesome. We aren't quite sure what they do for him, but right now, who cares. He can eat, once again, without filling the pool that we don't own.
The Mayo looks like it is set for early October. We will be staying at the hotel connected to the clinic and get "coupons" for meals. Perhaps we will try an upgrade on food. Although since Rochester is mainly known for the hospital, I doubt we will find much in the way of fine dining.
We both have been feeling a bit sick lately. No big deal, but just enough that neither of us have much energy left at the end of the day to be with each other. The weather is improving, so maybe that will improve our health, too.
Okay, I admit I wrote this entry today simply to fulfill my goal of writing each day. After all, my goal was to write each day, not to entertain my faithful readers.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a tired writer
The new eye drops seem to help the saliva issue quite well. Once again, however, the side effects are rather troublesome. We aren't quite sure what they do for him, but right now, who cares. He can eat, once again, without filling the pool that we don't own.
The Mayo looks like it is set for early October. We will be staying at the hotel connected to the clinic and get "coupons" for meals. Perhaps we will try an upgrade on food. Although since Rochester is mainly known for the hospital, I doubt we will find much in the way of fine dining.
We both have been feeling a bit sick lately. No big deal, but just enough that neither of us have much energy left at the end of the day to be with each other. The weather is improving, so maybe that will improve our health, too.
Okay, I admit I wrote this entry today simply to fulfill my goal of writing each day. After all, my goal was to write each day, not to entertain my faithful readers.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a tired writer
Fun Outings
An extra day off from work! I love three day weekends. I feel like I have really have enough time to sleep, clean, cook, and completely relax. Dennis actually gets to spend time with the real weekend Ann, or "Fun Bobby," as he likes to call me.
"Fun Bobby" used to mean that I would go out with him in the evening for drinks, dinner and dancing. Now it means I take him to Walgreen's.
Walgreen's has become one of Dennis' preferred spots to hang out. And it doesn't bug me like Burlington Coat Factory. First of all, there are no clothes to speak of at Walgreen's. Sure, they have a few odd and end slippers, and t-shirts, but nothing that a person could look at for hours on end. Secondly, they have a little bit of almost everything a person needs, so there is plenty to look at. Thirdly, they truly have some great deals.
For instance, since Dennis has been struggling with his weight, he has been drinking a supplement. There are two name brands out there - Boost and Ensure. They both cost around 1.25 a serving. Walgreen's carries it's own brand. It costs about 0.75 a serving. Dennis says it tastes the same, so we may as well go with the cheaper brand.
Then they have close-outs all of the time. Today, there was a close-out on SanDisk 512 MG. They were selling it for 10.00. We both use the disk in our cameras, so of course we purchased one. One of will use it sooner or later.
But Dennis' favorite place to hang is the end of the aisle clearance heap. Walgreen's literally piles the extra stuff on the end caps, and if you are willing to hunt you may find something that is a real bargain. I know, Target and other stores do the same, but no place I have ever been beats Walgreen's on end cap reductions.
So, once or twice a month, Dennis and "Fun Bobby" head to Walgreen's, buy our essentials, and spend a fair amount of time at the end caps of the aisles. Hey, what ever turns you on, right?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and "Fun Bobby", Walgreen's style
"Fun Bobby" used to mean that I would go out with him in the evening for drinks, dinner and dancing. Now it means I take him to Walgreen's.
Walgreen's has become one of Dennis' preferred spots to hang out. And it doesn't bug me like Burlington Coat Factory. First of all, there are no clothes to speak of at Walgreen's. Sure, they have a few odd and end slippers, and t-shirts, but nothing that a person could look at for hours on end. Secondly, they have a little bit of almost everything a person needs, so there is plenty to look at. Thirdly, they truly have some great deals.
For instance, since Dennis has been struggling with his weight, he has been drinking a supplement. There are two name brands out there - Boost and Ensure. They both cost around 1.25 a serving. Walgreen's carries it's own brand. It costs about 0.75 a serving. Dennis says it tastes the same, so we may as well go with the cheaper brand.
Then they have close-outs all of the time. Today, there was a close-out on SanDisk 512 MG. They were selling it for 10.00. We both use the disk in our cameras, so of course we purchased one. One of will use it sooner or later.
But Dennis' favorite place to hang is the end of the aisle clearance heap. Walgreen's literally piles the extra stuff on the end caps, and if you are willing to hunt you may find something that is a real bargain. I know, Target and other stores do the same, but no place I have ever been beats Walgreen's on end cap reductions.
So, once or twice a month, Dennis and "Fun Bobby" head to Walgreen's, buy our essentials, and spend a fair amount of time at the end caps of the aisles. Hey, what ever turns you on, right?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and "Fun Bobby", Walgreen's style
Sunday, August 31, 2008
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
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
Saturday, August 30, 2008
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
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
Friday, August 29, 2008
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
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
Thursday, August 28, 2008
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
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
Wednesday, August 27, 2008
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
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
Tuesday, August 26, 2008
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)
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)
Monday, August 25, 2008
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.
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.
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