I haven't done any information sharing in my blog lately. So today will be a lesson in MSA/Shy-Drager.
When Dennis was first diagnosed with Shy-Drager, he was recruited by Mayo Clinic, in Rochester for a study. After the tests were completed, the doctors concluded that Dennis did not have MSA/Shy-Drager and encouraged us to see another neurologist, a movement disorder specialist. This neurologist said that Dennis did indeed have MSA, but instead MSA - P. Here is a brief description of the differences between the two as well as a 3rd type of MSA.
When autonomic failure predominates, MSA is sometimes termed Shy-Drager syndrome. When extrapyramidal features predominate, the term striatonigral degeneration, parkinsonian variant, or MSA-P is sometimes used. When cerebellar features predominate, MSA is sometimes termed sporadic olivopontocerebellar atrophy or MSA-C.
In plain English, this means that MSA has 3 different forms, each with a different group of symptoms predominating. Dennis has the type that looks like Parkinson's. Most MSA patients have the type where the autonomic systems deteriorate first. (Autonomic systems are those that your brain automatically controls - blood pressure changes, sweating, etc). The last type is identified by a gross lack of coordination.
The diagnosis of MSA, MSA - P, or MSA - C is given when the main symptom plus at least one other symptom is apparent in a patient. In MSA - P, Dennis' type, the main symptom is gait disorder. He has that plus 4 out of 5 of the other symptoms. The only symptom he does not display on a regular basis is tremors. In addition, he has one or two symptoms of each of the other types of MSA.
If you, or someone you give care to, has MSA, I would be curious what type of MSA you believe is the correct diagnosis.
Until later,
Ann and Dennis
Showing posts with label Shy Drager. Show all posts
Showing posts with label Shy Drager. Show all posts
Sunday, August 2, 2009
Wednesday, June 17, 2009
Being a Bother
"You act as if I am a bother!" Dennis griped at me this morning.
Well, Dennis, sometimes you are. That doesn't take away the fact that I love you. But when you wake me at 3 in the morning and ask me to turn you, you are a bother. When you wake me again at 6 am (and yes, I had just fallen back to sleep around 5) and ask for Boost, you are a bother. When I have just, that very minute, sat down with a cup of coffee and kitty on my lap, and you call out, "Aaaaaaaaaaaaaannnnnnnnnn", you are a bother.
Jane, my sister, says this is just men in general. Mother says, "He is such a good guy, and I admire you." Friends say, "I don't know how you do it." Dennis' family says, "Thank you. You must really love him."
Dennis and I talked. I told him that sometimes he was a bother. I also reminded him that he was married to a woman who had serious mental health issues, and hadn't she been a bother? I have never been a mother, but I can only assume that at times, children are a bother.
I suppose I could work harder at not rolling my eyes, after all I hate the old eye roll myself. I could "sigh" less, I suppose. And I could stop telling him that he is driving me crazy. I am so good at verbalizing everything, that I forget that Dennis is sensitive.
We will work this out. So far we have been able to work everything out. It helps that we are both highly motivated to stay together. "What's love got to do with it?" Everything, my friends. Everything.
Until later,
Ann and Dennis
Well, Dennis, sometimes you are. That doesn't take away the fact that I love you. But when you wake me at 3 in the morning and ask me to turn you, you are a bother. When you wake me again at 6 am (and yes, I had just fallen back to sleep around 5) and ask for Boost, you are a bother. When I have just, that very minute, sat down with a cup of coffee and kitty on my lap, and you call out, "Aaaaaaaaaaaaaannnnnnnnnn", you are a bother.
Jane, my sister, says this is just men in general. Mother says, "He is such a good guy, and I admire you." Friends say, "I don't know how you do it." Dennis' family says, "Thank you. You must really love him."
Dennis and I talked. I told him that sometimes he was a bother. I also reminded him that he was married to a woman who had serious mental health issues, and hadn't she been a bother? I have never been a mother, but I can only assume that at times, children are a bother.
I suppose I could work harder at not rolling my eyes, after all I hate the old eye roll myself. I could "sigh" less, I suppose. And I could stop telling him that he is driving me crazy. I am so good at verbalizing everything, that I forget that Dennis is sensitive.
We will work this out. So far we have been able to work everything out. It helps that we are both highly motivated to stay together. "What's love got to do with it?" Everything, my friends. Everything.
Until later,
Ann and Dennis
Monday, June 15, 2009
Money and Care
I have been trying to find my mother a decent place to live in an assisted living complex. It seems like it should be easy, but I am finding out that it is not. Every single place is completely different in what they offer. Some rooms have only a bed and a sitting area, others have full bathrooms and full kitchens, and yet others, have no private bathroom at all.
I remember last year when Dennis was in after care at a nursing facility, and how much he hated the place and the experience. It made him feel old and useless. I actually think he deteriorated more by staying in the facility than he would have had he been at home.
It also comes down to money. Private pay gets you a better place, but there is only so much money in this world. I can find better places in Minneapolis, but they are even more expensive.
It seems very unfair to me, given my mom's and Dennis' conditions, that money should be a factor in the type of care that they get. Shouldn't the sick and old get the best care, no matter what the financial status of the person? Something in our system is very broken.
I remember last year when Dennis was in after care at a nursing facility, and how much he hated the place and the experience. It made him feel old and useless. I actually think he deteriorated more by staying in the facility than he would have had he been at home.
It also comes down to money. Private pay gets you a better place, but there is only so much money in this world. I can find better places in Minneapolis, but they are even more expensive.
It seems very unfair to me, given my mom's and Dennis' conditions, that money should be a factor in the type of care that they get. Shouldn't the sick and old get the best care, no matter what the financial status of the person? Something in our system is very broken.
Saturday, June 6, 2009
Freezing
Every once in a while, Dennis freezes and is incapable of initiating a move. Today he had one of those episodes. Naturally, we were outside in the first rainy day for the past 30 days.
This time, he could not lift his foot to get into the car. He just stood there, rain pouring down on both of us, completely unable to move. After standing there for a ridiculous amount of time, I tried to lift his leg by grabbing his calf. I couldn't budge it. I attempted this same rescue a couple of times, before finally succeeding by grabbing the tab on the back of his shoe. I was able to move his foot up and into the car. He was then able to get the rest of his body moving, and into the car.
This is a short post. Either blogspot is working funky or it's the Vista, again.
Until later,
Ann and Dennis
This time, he could not lift his foot to get into the car. He just stood there, rain pouring down on both of us, completely unable to move. After standing there for a ridiculous amount of time, I tried to lift his leg by grabbing his calf. I couldn't budge it. I attempted this same rescue a couple of times, before finally succeeding by grabbing the tab on the back of his shoe. I was able to move his foot up and into the car. He was then able to get the rest of his body moving, and into the car.
This is a short post. Either blogspot is working funky or it's the Vista, again.
Until later,
Ann and Dennis
Thursday, June 4, 2009
Feeding Tube
Dennis has lost 30 pounds in the past year. The first 15 he was grateful to loose, the next 15, I was grateful he lost. It's easier for him to walk around, and much easier for me to help him get up and get around. However, it cannot keep going down and down.
Several people involved in Dennis' care have thrown around the idea of inserting a feeding tube. This seemed to me to be a last resort. I cannot fathom the idea of never being able to eat again. I don't think a world where Dennis is unable to eat pie is a world in which he wants to live. And how would he exist without ice cream?
But, yesterday, a visit with the speech therapist cleared up this whole feeding tube business. We found out it is really just a button that open and shuts, and nutrition is inserted via a needle, into the stomach. It is used more as a supplement to nutrition rather than a substitution for the whole enchilada. He can still eat, but when he is too tired to get all of his nutrition through edible food, we can stuff his belly full of liquid food.
I am feeling so much better about this whole business now. And, for those of you that expressed concern about my feeling overwhelmed the other day - thanks, and I am feeling much better.
Until later,
Ann and Dennis
Several people involved in Dennis' care have thrown around the idea of inserting a feeding tube. This seemed to me to be a last resort. I cannot fathom the idea of never being able to eat again. I don't think a world where Dennis is unable to eat pie is a world in which he wants to live. And how would he exist without ice cream?
But, yesterday, a visit with the speech therapist cleared up this whole feeding tube business. We found out it is really just a button that open and shuts, and nutrition is inserted via a needle, into the stomach. It is used more as a supplement to nutrition rather than a substitution for the whole enchilada. He can still eat, but when he is too tired to get all of his nutrition through edible food, we can stuff his belly full of liquid food.
I am feeling so much better about this whole business now. And, for those of you that expressed concern about my feeling overwhelmed the other day - thanks, and I am feeling much better.
Until later,
Ann and Dennis
Monday, June 1, 2009
Overwhelmed, For the Moment
I have worked very hard to avoid the feeling that I am overwhelmed, but this weekend it hit me between my eyes like a ton of bricks. I am only able to deal with so much, and, it seems, I have reached my limit.
I cannot deal with the long emails from Personal Care Attendants (who are calling themselves, personal care providers, in Wisconsin). I now understand Minneapolis' ex-crazy superintendent who asked that everything be sent to her in bullets. PLEASE send me bullets. You may want to become a writer of the next great American novel, but please, do not do this at my (or Jane's) expense.
I am so done with Dennis' PCAs not turning up on time, or simply not turning up. Actually, the same goes for Mother's attendants.
There are drugs coming to mom, that the insurance company let me know about, but they did not tell me whose drugs were being mailed.
There is always dinner....shit, I am writing this before making dinner. Be back in a jiff, folks.
Okay, slow down, Ann. Dinner will be asparagus, already purchased and ready to steam, and sea fish, of some kind, ready for lemon induced oil and a bit of garlic. Things are not so bad.
I am surprised that life has caught up with me. But it has. And there it is. I am exhausted, and do not have a whole lot to spare.
I cannot deal with the long emails from Personal Care Attendants (who are calling themselves, personal care providers, in Wisconsin). I now understand Minneapolis' ex-crazy superintendent who asked that everything be sent to her in bullets. PLEASE send me bullets. You may want to become a writer of the next great American novel, but please, do not do this at my (or Jane's) expense.
I am so done with Dennis' PCAs not turning up on time, or simply not turning up. Actually, the same goes for Mother's attendants.
There are drugs coming to mom, that the insurance company let me know about, but they did not tell me whose drugs were being mailed.
There is always dinner....shit, I am writing this before making dinner. Be back in a jiff, folks.
Okay, slow down, Ann. Dinner will be asparagus, already purchased and ready to steam, and sea fish, of some kind, ready for lemon induced oil and a bit of garlic. Things are not so bad.
I am surprised that life has caught up with me. But it has. And there it is. I am exhausted, and do not have a whole lot to spare.
Sunday, May 24, 2009
Virtual Friends
Ten years ago, or so, I began to keep up with my relationships by email. When I would vacation, I would send home emails about my adventures. I remember first starting this when I went to Guatemala to study Spanish.
Eight years ago, I met Dennis online. Well, actually, we were introduced online and met in person a few days later. When we met, we knew that both of us were honest about who we were online, and that we had so very much in common.
Nowadays, I have several virtual friends and acquaintances.
There is Iva, in Sweden, who reads my blog frequently and comments often. Iva has a heart of gold and always is here to give me as virtual hug.
A woman, whose mother has MSA/SDS, or something Parkisonian, that was so thoughtful to send me an ecard when dad died this month. We have corresponded a bit, and I find some relief in her emails, as she finds some relief in my blog.
Lola, and Poppie, in London, who we have been lucky enough to meet. We both love them to bits. We would never have met them had it not been for this darn thing called Internet.
I keep up with my family and friends via email, or texting, even more often than telephone. I doubt if my nephew has ever handwritten a letter and sent it via postal mail, but that doesn't mean we aren't in touch. There are those (over the age of 100) that would argue, that virtual friendships are not as deep as real friendships. I, being my obstinate, stubborn self would argue, that some of my very deepest relationships are virtual.
Until later,
Ann and Dennis
Eight years ago, I met Dennis online. Well, actually, we were introduced online and met in person a few days later. When we met, we knew that both of us were honest about who we were online, and that we had so very much in common.
Nowadays, I have several virtual friends and acquaintances.
There is Iva, in Sweden, who reads my blog frequently and comments often. Iva has a heart of gold and always is here to give me as virtual hug.
A woman, whose mother has MSA/SDS, or something Parkisonian, that was so thoughtful to send me an ecard when dad died this month. We have corresponded a bit, and I find some relief in her emails, as she finds some relief in my blog.
Lola, and Poppie, in London, who we have been lucky enough to meet. We both love them to bits. We would never have met them had it not been for this darn thing called Internet.
I keep up with my family and friends via email, or texting, even more often than telephone. I doubt if my nephew has ever handwritten a letter and sent it via postal mail, but that doesn't mean we aren't in touch. There are those (over the age of 100) that would argue, that virtual friendships are not as deep as real friendships. I, being my obstinate, stubborn self would argue, that some of my very deepest relationships are virtual.
Until later,
Ann and Dennis
Thursday, May 21, 2009
Listening and Talking
When I arrived home today, Dennis shared the good news that he was up at 8:30 this morning. In addition to getting out of bed early, he ate a huge breakfast, did some weight lifting, walked outside for a while and was cheerful. A nice change from yesterday.
His drooling is getting beyond pesky again, though. His botox has worn off, and his nurse practitioner is reticent about receiving another injection. She is afraid that his pneumonia last month was, at least in part, exacerbated by the injections. This was disappointing news, as his speech is so difficult to understand under the best of conditions. The more saliva he produces, the more difficult his speech is to decipher. The injections were the first intervention that helped even a little bit.
What all of this means for me is, simply, we are not communicating as easily. Dennis is the talker and I am the listener. Okay, those of you that know me well, know that I love to talk, too. But, I am basically lazy, and if I am around someone who likes to talk more than me, I easily acquiesce. Dennis likes to talk more than I do, so I have become the listener. It isn't easy being a listener, however, when the talker is so difficult to understand.
We have played these roles for so long, it is difficult to change. I simply need to become the talker, once again, as Dennis takes on the role of listener. I have a feeling, deep down, that the transition will be much easier for me, than it is for Dennis.
Until tomorrow,
Ann and Dennis
His drooling is getting beyond pesky again, though. His botox has worn off, and his nurse practitioner is reticent about receiving another injection. She is afraid that his pneumonia last month was, at least in part, exacerbated by the injections. This was disappointing news, as his speech is so difficult to understand under the best of conditions. The more saliva he produces, the more difficult his speech is to decipher. The injections were the first intervention that helped even a little bit.
What all of this means for me is, simply, we are not communicating as easily. Dennis is the talker and I am the listener. Okay, those of you that know me well, know that I love to talk, too. But, I am basically lazy, and if I am around someone who likes to talk more than me, I easily acquiesce. Dennis likes to talk more than I do, so I have become the listener. It isn't easy being a listener, however, when the talker is so difficult to understand.
We have played these roles for so long, it is difficult to change. I simply need to become the talker, once again, as Dennis takes on the role of listener. I have a feeling, deep down, that the transition will be much easier for me, than it is for Dennis.
Until tomorrow,
Ann and Dennis
Wednesday, May 20, 2009
Restlessness, Perhaps?
It was a crazy day at work with 12 substitutes and a whole lot of restless students. It was the second day of over 90 degree temps outside, and the barometric pressure was in the middle of a huge change.
About an hour before the end of the day, Raquel called. Dennis had refused to get out of bed all day. She had tried at 9 AM to rouse him, again at 11 AM and once more at 1 PM. He finally said he would sit up and eat ice cream before she left at 2:30.
He decided to get up and sit in his chair when I came home. He said he wasn't feeling well, but wasn't able to put his finger on what was really wrong. He was dizzy. He was tired. He was depressed. But he couldn't say any one specific thing.
I think he is feeling the same thing all the kids and teachers were feeling today. Antsy to get up and out and have fun, yet knowing it just isn't the right time, yet.
Hang in there, Dennis. I will be home to entertain you very soon. We will fly to Ireland for a couple of weeks, and practice drinking Guinness. You will rise to the occasion and have lots of fun. Just be a little patient, my dear.
Until later,
Ann and Dennis
About an hour before the end of the day, Raquel called. Dennis had refused to get out of bed all day. She had tried at 9 AM to rouse him, again at 11 AM and once more at 1 PM. He finally said he would sit up and eat ice cream before she left at 2:30.
He decided to get up and sit in his chair when I came home. He said he wasn't feeling well, but wasn't able to put his finger on what was really wrong. He was dizzy. He was tired. He was depressed. But he couldn't say any one specific thing.
I think he is feeling the same thing all the kids and teachers were feeling today. Antsy to get up and out and have fun, yet knowing it just isn't the right time, yet.
Hang in there, Dennis. I will be home to entertain you very soon. We will fly to Ireland for a couple of weeks, and practice drinking Guinness. You will rise to the occasion and have lots of fun. Just be a little patient, my dear.
Until later,
Ann and Dennis
Monday, May 18, 2009
Diarrhea or Constipation?
Okay, it's back to the poop story again. Dennis found Activia, which seems to control his constipation. Unfortunately, it brings on massive diarrhea, and loss of bowel control. It ain't pretty.
I don't believe that by eating Activia on a daily basis, he has changed this drastically. He has gone from sitting on the toilet, grunting, for hours on end to now messing himself all day long, day after day.
I left a message on the nurse line today. This isn't normal. This does not bode well for future bathroom problems. I think I am about to learn something new - something I wish I could live without knowing.
He is not feeling good about himself. Of course he is not. But it doesn't do either of us any good to pout about what we are unable to control. Perhaps there is an easy answer to this newest of problems. Now wouldn't that be nice?
Until later,
Ann and Dennis
I don't believe that by eating Activia on a daily basis, he has changed this drastically. He has gone from sitting on the toilet, grunting, for hours on end to now messing himself all day long, day after day.
I left a message on the nurse line today. This isn't normal. This does not bode well for future bathroom problems. I think I am about to learn something new - something I wish I could live without knowing.
He is not feeling good about himself. Of course he is not. But it doesn't do either of us any good to pout about what we are unable to control. Perhaps there is an easy answer to this newest of problems. Now wouldn't that be nice?
Until later,
Ann and Dennis
Wednesday, May 6, 2009
Dennis Is Not Alone
I have been receiving a few emails from care-givers, lately. It seems there are a few undiagnosed Parkinson's related diseases existing in the world. They all have quite a bit in common, but none completely match what Dennis is going through.
Something is fishy. I don't believe anyone is out there, hiding the truth from us - I am not a complete nut - but, there seems to be a few too many undiagnosed, neurological disorders that is complicating the lives of too many baby boomers.
Or, perhaps, these diseases have always been in existence.
It really does not matter. Dennis is suffering from a disease his brain is controlling. Or, perhaps it is a disease that his brain lacks control over. We don't know what it is, this nasty thing. There is no stopping this disorder, not right now. We can somewhat control the symptoms, but we cannot stop the progression. Not today.
I hope someday the medical world will figure out how the brain works, how to fix malfunctions and how to keep the brain from interfering with everyone living the best life. This most likely will not happen in Dennis' lifetime. Maybe none of our lifetimes. But it seems to me, it should be at least pursued a bit more aggressively.
Something is fishy. I don't believe anyone is out there, hiding the truth from us - I am not a complete nut - but, there seems to be a few too many undiagnosed, neurological disorders that is complicating the lives of too many baby boomers.
Or, perhaps, these diseases have always been in existence.
It really does not matter. Dennis is suffering from a disease his brain is controlling. Or, perhaps it is a disease that his brain lacks control over. We don't know what it is, this nasty thing. There is no stopping this disorder, not right now. We can somewhat control the symptoms, but we cannot stop the progression. Not today.
I hope someday the medical world will figure out how the brain works, how to fix malfunctions and how to keep the brain from interfering with everyone living the best life. This most likely will not happen in Dennis' lifetime. Maybe none of our lifetimes. But it seems to me, it should be at least pursued a bit more aggressively.
Thursday, April 30, 2009
Such a Sweetie
Dennis visited with Jean, the nurse practitioner who works with Dr. Nance, today. He hasn't told me much about the visit, but he brought home a copy of a letter she wrote to his insurance company on his behalf.
She, like everyone else he encounters, noted his upbeat attitude and contagious smile. I love his goofy laugh and very peculiar sense of humor even more. Most of all, I love that he can still make me laugh.
Dennis has so many wonderful attributes that are getting lost in the mire of this awful disease. At least his humor, his enjoyment of life, has not disappeared. For that, I feel very lucky.
She, like everyone else he encounters, noted his upbeat attitude and contagious smile. I love his goofy laugh and very peculiar sense of humor even more. Most of all, I love that he can still make me laugh.
Dennis has so many wonderful attributes that are getting lost in the mire of this awful disease. At least his humor, his enjoyment of life, has not disappeared. For that, I feel very lucky.
Thursday, February 12, 2009
Dang It, I Hate Being Human
Some evenings, like this one, I do everything I can think of, rather than write in my blog. Why is this? Writing should be (and really is) a way to clear myself of what is and isn't working. It should feel good. But I still avoid it, some days.
I do the same thing with exercise. Actually, I don't exercise, much. So I don't really do the same thing. I do blog, most nights and I also avoid exercise, most nights. And both make me feel better, in the long run. Hmmmm. I need to think this through... but I don't really want to, tonight, at least.
I guess it comes down to the question of how we choose to live our lives. Do we want to wallow in what is icky in our lives, or do we decide to do what makes us feel good? I have never understood why we decide to make poor choices. Sheese. My paying job and my personal life, could be so much better if I could figure out my own motivation. Is it really just denial?
I hate to think, or to know, that I am so easily explained by mere labels.
Until later
Ann and Dennis
I do the same thing with exercise. Actually, I don't exercise, much. So I don't really do the same thing. I do blog, most nights and I also avoid exercise, most nights. And both make me feel better, in the long run. Hmmmm. I need to think this through... but I don't really want to, tonight, at least.
I guess it comes down to the question of how we choose to live our lives. Do we want to wallow in what is icky in our lives, or do we decide to do what makes us feel good? I have never understood why we decide to make poor choices. Sheese. My paying job and my personal life, could be so much better if I could figure out my own motivation. Is it really just denial?
I hate to think, or to know, that I am so easily explained by mere labels.
Until later
Ann and Dennis
Wednesday, February 11, 2009
A Substitute Teacher
The speech therapist at school is on vacation and we have had a substitute all week. I usually try to meet all subs and give them a heads up on difficult children and our school expectations. I found this particular woman while she was talking with a group of some of my favorite classroom teachers. It seems they had worked together in the past, and had enjoyed each others company.
Yesterday, she came to me and asked if we could speak privately. It was no big deal, but it ended up in a very nice conversation.
She is has stage 4 cancer. To look at her, you would never guess that she has a life sentence hanging over her head. She has chosen to live each day full of joy and full of life. She is living focused on what is right and not on what is wrong.
She and talked about how a person actually accomplishes this goal. I think a happy spirit, to begin with, helps. She thought a person simply needed to adopt this way of thinking.
I doubt if either of us has the answer to how to meet this particular goal, but I do know that she and I, and Dennis and her husband, are all working on it daily. I suppose that, ultimately, is what is important - know your goal and work.
Until later,
Ann and Dennis
Yesterday, she came to me and asked if we could speak privately. It was no big deal, but it ended up in a very nice conversation.
She is has stage 4 cancer. To look at her, you would never guess that she has a life sentence hanging over her head. She has chosen to live each day full of joy and full of life. She is living focused on what is right and not on what is wrong.
She and talked about how a person actually accomplishes this goal. I think a happy spirit, to begin with, helps. She thought a person simply needed to adopt this way of thinking.
I doubt if either of us has the answer to how to meet this particular goal, but I do know that she and I, and Dennis and her husband, are all working on it daily. I suppose that, ultimately, is what is important - know your goal and work.
Until later,
Ann and Dennis
Sunday, February 8, 2009
New Electronics
Six years ago, Dennis purchased a large screen, high definition TV complete with surround sound. It was so huge, and our living room so small, that when you walked into our home, all you would see is the television. But it was what everyone else secretly desired to own, or so Dennis thought, and he loved the heck out of his set-up.
Over Christmas, Hamed, my nephew, pointed out that our picture was washed out and lousy for watching football. This got Dennis' attention. I think it was because our old, expensive, and state of the art TV was a rear projection model, and our new windows, full of sun, sucked all of the life and color out of it. That and a $350 lamp that needed replacement hadn't been changed for a while.
We set the end of February for the date to purchase a new one. Last Friday, however, our bedroom TV simply stopped working. It had never been a great TV and neither of us were surprised when it died. Saturday, Dennis told me we had about $2,500 in our checking account to spend on whatever we wanted to purchase. We decide to buy a new TV for the bedroom and we might as well buy the living room TV at the same time.
So, Saturday we went shopping. We bought a new TV for the living room and the bedroom. But it doesn't ever stop, with electronics, does it? We are the proud owners of a BlueRay (the next generation of DVD) and a fancy, schmancy outlet, that cost a pretty penny. Supposedly, all of this stuff will pay off in great pictures and preventing burnout of the television.
Life has changed dramatically, hasn't it? Almost everyone reading this will remember black and white TV. Some of us will remember the console TV. Some of us will even remember life without TV.
It's amazing how far we have come with electronics. Now if we could make some movement in brain disorders....
Over Christmas, Hamed, my nephew, pointed out that our picture was washed out and lousy for watching football. This got Dennis' attention. I think it was because our old, expensive, and state of the art TV was a rear projection model, and our new windows, full of sun, sucked all of the life and color out of it. That and a $350 lamp that needed replacement hadn't been changed for a while.
We set the end of February for the date to purchase a new one. Last Friday, however, our bedroom TV simply stopped working. It had never been a great TV and neither of us were surprised when it died. Saturday, Dennis told me we had about $2,500 in our checking account to spend on whatever we wanted to purchase. We decide to buy a new TV for the bedroom and we might as well buy the living room TV at the same time.
So, Saturday we went shopping. We bought a new TV for the living room and the bedroom. But it doesn't ever stop, with electronics, does it? We are the proud owners of a BlueRay (the next generation of DVD) and a fancy, schmancy outlet, that cost a pretty penny. Supposedly, all of this stuff will pay off in great pictures and preventing burnout of the television.
Life has changed dramatically, hasn't it? Almost everyone reading this will remember black and white TV. Some of us will remember the console TV. Some of us will even remember life without TV.
It's amazing how far we have come with electronics. Now if we could make some movement in brain disorders....
Thursday, February 5, 2009
That Dreaded Call Out
I came home from work at 5:00 today, and the first thing I heard, when I opened the door was that dreaded word, "HELP". Dennis had fallen out of bed while trying to get up. He had been holding on to the end table with his arms, and his face was plastered up against the top of the table. His legs were half on the floor and half on his wheel chair. He had been there an hour.
He wasn't hurt, but he was fatigued. Fatigued from holding himself up to keep his "pull down" from turning into a "fall." Ya gotta love his spin on the event.
It turned out to be a non-event. Well, that is if you call a pull down, and vomiting, a non-event. These days, I guess that is what we call not seeing blood or bruises.
Note to self: Must remind Dennis that if he is not good when left alone for a couple of hours, we will need to have someone here around the clock.
Until later,
Ann and Dennis
He wasn't hurt, but he was fatigued. Fatigued from holding himself up to keep his "pull down" from turning into a "fall." Ya gotta love his spin on the event.
It turned out to be a non-event. Well, that is if you call a pull down, and vomiting, a non-event. These days, I guess that is what we call not seeing blood or bruises.
Note to self: Must remind Dennis that if he is not good when left alone for a couple of hours, we will need to have someone here around the clock.
Until later,
Ann and Dennis
Wednesday, February 4, 2009
All This, and No Results, Yet
I am glad that this Mayo visit is finished. It ended up being two very long days and in the end, we never heard the results of the tests. I know we will, eventually, but it is rather a let down spend two days coming and going from the hospital and end up knowing nothing new.
The tests themselves weren't much of anything, from what Dennis told me. Both days he would start out with a cursory check by the nurse, and then he would drink some iodine. The first day this burned his throat, but he was a trooper and took it again the second day. Then he was with the technician being stuck with needles, forcing dye through his veins and towards his heart. He was so comfortable, he fell asleep the first day. We would have between one and four hours off, when he would return and have pictures taken.
All in all it was dull and long. In fact, the most exciting part of the whole adventure was the poop fest. Now aren't you envying us our daily lives?
The tests themselves weren't much of anything, from what Dennis told me. Both days he would start out with a cursory check by the nurse, and then he would drink some iodine. The first day this burned his throat, but he was a trooper and took it again the second day. Then he was with the technician being stuck with needles, forcing dye through his veins and towards his heart. He was so comfortable, he fell asleep the first day. We would have between one and four hours off, when he would return and have pictures taken.
All in all it was dull and long. In fact, the most exciting part of the whole adventure was the poop fest. Now aren't you envying us our daily lives?
Monday, February 2, 2009
Day One of Research Test Two
It was a long day - with driving, doctor visits and test, pooping and cleaning up. We had settled into our hotel room and decided to find a place to have a dessert before retiring for the evening. We were both exhausted, but we weren't quite ready to watch TV in bed. There just isn't much else to do in a cheap hotel room, and the book I brought was not calling to me.
We cleaned up, to the best of our abilities, and headed out through the crazy subway and sky way system of Rochester. Rochester is all about the business of hospitals, clinics, research, hotels and restaurants. The subway, and sky way walkways seem to be add-ons, to ensure shopping and eating while making your way around the tiny downtown area in the cold of Minnesota winters. They aren't efficient or direct, but then I am spoiled by the great sky-way system of downtown Minneapolis.
We were off. We weren't venturing too far, just to a hotel a few blocks away. We turned down the wrong hallway, when Dennis said, "Take me back to the room."
We had crabbed at each other all day. He was demanding too much, and I was bossing him around too much. It took me 7 minutes to eat my lunch time burger, it took him 40 minutes to eat half of his. He needed to be cleaned up a few times because of pooping issues, and I didn't feel like cleaning up crap all day. The list of complaints we had were trivial, and really just frustrations that life wasn't feeling quite fair at this particular place and time.
Today was day one of the test. Tomorrow we will find out, we hope, that he does not really have MSA or Shy-Drager. I suppose this was weighing on us all day, too.
We cleaned up, to the best of our abilities, and headed out through the crazy subway and sky way system of Rochester. Rochester is all about the business of hospitals, clinics, research, hotels and restaurants. The subway, and sky way walkways seem to be add-ons, to ensure shopping and eating while making your way around the tiny downtown area in the cold of Minnesota winters. They aren't efficient or direct, but then I am spoiled by the great sky-way system of downtown Minneapolis.
We were off. We weren't venturing too far, just to a hotel a few blocks away. We turned down the wrong hallway, when Dennis said, "Take me back to the room."
We had crabbed at each other all day. He was demanding too much, and I was bossing him around too much. It took me 7 minutes to eat my lunch time burger, it took him 40 minutes to eat half of his. He needed to be cleaned up a few times because of pooping issues, and I didn't feel like cleaning up crap all day. The list of complaints we had were trivial, and really just frustrations that life wasn't feeling quite fair at this particular place and time.
Today was day one of the test. Tomorrow we will find out, we hope, that he does not really have MSA or Shy-Drager. I suppose this was weighing on us all day, too.
Sunday, February 1, 2009
Super Bowl Sunday
Oh, gawd. It is Super Bowl Sunday. Dennis has the TV tuned to the game, 2 hours before it is scheduled to start. This is the longest football day of the year. He is even sitting on one of the leather chairs, for the event. His lap is covered with salsa and chips and he is sucking on a Coke.
The perfect football zombie.
I imagine there is a positive side to being a football zombie. He has a way to relax and ignore the outside world. Well, all but 90 football players, several coaches, many high cost ads, etc, etc, etc. At least politics, world woes, economics, an irritating disease and his partner mean nothing to him for a few hours each Sunday.
I have my own diversions. This is just one of his. I admit that I do not understand this particular means of letting go. I suppose that he does not truly comprehend mine, either.
So I will make the special Super Bowl dinner and try to watch TV with him for a few hours. But, most importantly, I will try not to complain too loudly or too often.
The perfect football zombie.
I imagine there is a positive side to being a football zombie. He has a way to relax and ignore the outside world. Well, all but 90 football players, several coaches, many high cost ads, etc, etc, etc. At least politics, world woes, economics, an irritating disease and his partner mean nothing to him for a few hours each Sunday.
I have my own diversions. This is just one of his. I admit that I do not understand this particular means of letting go. I suppose that he does not truly comprehend mine, either.
So I will make the special Super Bowl dinner and try to watch TV with him for a few hours. But, most importantly, I will try not to complain too loudly or too often.
Saturday, January 31, 2009
The Good Fight
We have been on a few missions this week, trying to fight the good fight. We didn't make much headway, however.
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
Subscribe to:
Posts (Atom)