When the music that wakes me each morning begins, Shiva springs up on the bed for her morning stretches, cuddling sessions and remarkably soft purring. This morning she was already laying at the bottom of the bed wrapped around Dennis' feet. She made her way up to me, and I laid my hand on her back. It was all crusty and her hair was matted together.
I glanced over Dennis' way, and I realized why she had been in the bed and why her fur was yucky. He had eaten ice cream in bed last night. I don't know how much actually made it into his mouth. I do know that a pool of Cherry Garcia surrounded him, and that his face was covered in ice cream. Shiva evidentially had a veritable banquet last night, while I was gently snoring away.
Okay, okay, I know. I am supposed to have rules about all of these inconveniences. Even so, what do you do when a guys blood pressure is too low to stay up any longer, and he is still hungry? Even if it wasn't ice cream, with his new diet, it would still be something sloppy.
At least these days, with Raquel and JoAnne spending the day with him Monday through Friday, I don't have to come home to a mess to clean up before I can commence making dinner. By the time I came home from work, the sheets had been washed and the bed had been remade. It's expensive to have someone around all day long, but I cannot imagine going back to the insanity of last fall.
Thank you Raquel and JoAnne. You are keeping me sane in so many ways.
Tuesday, September 30, 2008
Monday, September 29, 2008
Work Me
Today this entry will be all about me. Well, at the least the Day Me, the me most of you don't know. This is the me that keeps me out of trouble, from 8 to 5, five days a week, 10 months a year. In other words, it's about me and work.
I am responsible for the "climate", (no, not the temperature) at school. I am the one who is held accountable for all of the students knowing the rules and living by the rules. In return I dole out (positive and negative) consequences for their choices. This also means, I am the one who is held responsible to make sure all of the teachers spend the time to teach the kids the rules. While I am able to reward them for doing their job, I am not able to hand out negative consequences.
Guess which one is the more difficult?
One of my responsibilities is to pull off a monthly reward celebration for children who honor the rules. While these happenings need to be motivating enough for children to look forward to earning, they don't need to be extremely memorable.
Last year we had a policeman bring in his partner, the police dog. I was preparing for the guy to show some of the moves the dog could make. At the very least I expected the dog to demonstrate some jumps. Unfortunately, the dog was only for show, and the policeman just talked to the kids. Toward the end of an agonizing 20 minutes, he eventually took out a rope and played tug-of-war with the dog. This is what the kids will recall, the last 30 seconds of the event.
See? The kids looked forward to seeing the police dog, but it definitely was only slightly memorable.
This year we will start off, on Tuesday, with Beach Blanket Bingo. We have Bingo Cards using all of the words from our expectations (rules). Sandy, the Jenny Lind All Star Staff Member forever, will read the words over the loudspeaker. As kids win at Bingo, they will come to the center of the school to collect their Grab Bag Prize. Then it's over. At least until the last day of the next month.
Anyhoo, that is what I do for about 20 minutes, out of one day, out of 197 duty days, of each school year. This means that you now know just a teeny bit more about me. Well, at least my Day Me.
I am responsible for the "climate", (no, not the temperature) at school. I am the one who is held accountable for all of the students knowing the rules and living by the rules. In return I dole out (positive and negative) consequences for their choices. This also means, I am the one who is held responsible to make sure all of the teachers spend the time to teach the kids the rules. While I am able to reward them for doing their job, I am not able to hand out negative consequences.
Guess which one is the more difficult?
One of my responsibilities is to pull off a monthly reward celebration for children who honor the rules. While these happenings need to be motivating enough for children to look forward to earning, they don't need to be extremely memorable.
Last year we had a policeman bring in his partner, the police dog. I was preparing for the guy to show some of the moves the dog could make. At the very least I expected the dog to demonstrate some jumps. Unfortunately, the dog was only for show, and the policeman just talked to the kids. Toward the end of an agonizing 20 minutes, he eventually took out a rope and played tug-of-war with the dog. This is what the kids will recall, the last 30 seconds of the event.
See? The kids looked forward to seeing the police dog, but it definitely was only slightly memorable.
This year we will start off, on Tuesday, with Beach Blanket Bingo. We have Bingo Cards using all of the words from our expectations (rules). Sandy, the Jenny Lind All Star Staff Member forever, will read the words over the loudspeaker. As kids win at Bingo, they will come to the center of the school to collect their Grab Bag Prize. Then it's over. At least until the last day of the next month.
Anyhoo, that is what I do for about 20 minutes, out of one day, out of 197 duty days, of each school year. This means that you now know just a teeny bit more about me. Well, at least my Day Me.
Sunday, September 28, 2008
A Bit of My Humor Has Returned
Life is good once more!
I woke up today and truthfully wanted to get out of bed. Once I was out of bed, I had an urge for a cup of coffee. I not only had the energy to brew it, but I enjoyed every drop of it. An hour later, and my stomach is not saying, "what are you doing to me, woman?"
I really was so laid up that I forgot what it feels like to feel good. Today I remember. Yes!
This week will be about focusing on Dennis' recent diet, and how we can both eat what is good for us, short of me having to prepare two different new meals each day. I have figured out that mechanical soft actually means hacked up and quite wet. Wednesday, I made pasta and cooked the crap out of it. The sauce was spicy sausage in addition to lots of marinara. Dennis had no problems with it at all, the first night.
Thursday, there was no getting me out of bed to make supper after his PCA left, so Dennis heated up the pasta. He couldn't swallow it.
I was still in the "don't talk to me, don't touch me, pretend I don't exist" stage of being sick. I wasn't capable, or agreeable for that matter, to say, "add water and more sauce when you reheat the pasta in the microwave." I think he ate the apple sauce I purchased a few weeks back because it was on sale.
Dennis' speech therapist claims she has two cookbooks she recommends for soft-mechanical diets. I looked at Amazon.com and wasn't able to locate much, but there are a scattering. From what I could tell, they don't give me any more information than I already have. Fish is okay, if it is boneless. Mashed potatoes are in, but they must be soaked in gravy. Any other type of potato is out. Veggies and fruits require being cooked to mush. No more corn on the cob, my dear.
So, my dear friends and family, if you have any recipes that you would like to share, I am happy to try them out. Just remember, mushy, over-cooked, no bread, but spicy is okay. All of this is, naturally, subject to immediate change.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Dysautonomias and a new diet.
I woke up today and truthfully wanted to get out of bed. Once I was out of bed, I had an urge for a cup of coffee. I not only had the energy to brew it, but I enjoyed every drop of it. An hour later, and my stomach is not saying, "what are you doing to me, woman?"
I really was so laid up that I forgot what it feels like to feel good. Today I remember. Yes!
This week will be about focusing on Dennis' recent diet, and how we can both eat what is good for us, short of me having to prepare two different new meals each day. I have figured out that mechanical soft actually means hacked up and quite wet. Wednesday, I made pasta and cooked the crap out of it. The sauce was spicy sausage in addition to lots of marinara. Dennis had no problems with it at all, the first night.
Thursday, there was no getting me out of bed to make supper after his PCA left, so Dennis heated up the pasta. He couldn't swallow it.
I was still in the "don't talk to me, don't touch me, pretend I don't exist" stage of being sick. I wasn't capable, or agreeable for that matter, to say, "add water and more sauce when you reheat the pasta in the microwave." I think he ate the apple sauce I purchased a few weeks back because it was on sale.
Dennis' speech therapist claims she has two cookbooks she recommends for soft-mechanical diets. I looked at Amazon.com and wasn't able to locate much, but there are a scattering. From what I could tell, they don't give me any more information than I already have. Fish is okay, if it is boneless. Mashed potatoes are in, but they must be soaked in gravy. Any other type of potato is out. Veggies and fruits require being cooked to mush. No more corn on the cob, my dear.
So, my dear friends and family, if you have any recipes that you would like to share, I am happy to try them out. Just remember, mushy, over-cooked, no bread, but spicy is okay. All of this is, naturally, subject to immediate change.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Dysautonomias and a new diet.
Saturday, September 27, 2008
Been Feeling Sickly
I am aware that I am a day or two behind on my blog writing. It has been a hectic week, work wise and at home. If that was not enough, I have been down with the flu for a few days. Actually, today is my first day out of bed since Wednesday.
But, as the saying goes, life goes on!
Dennis had a visit to his Parkinson's doctor on Thursday. Unfortunately, I was not able to go along, and his depression was not dealt with, once again. It's time to make an appointment with his general practitioner, who is warm and empathetic. Dr Nance, while an expert in Parkinson's, cannot be described using either of those words, even if you stretch the truth. She just poo-pooed his needing anti-depressants. My feeling is his life is tough enough right now. He shouldn't need to feel so depressed when there are perfectly good medications to help him.
He was able to find out, however, that Dr. Low, the doctor he will visit in Rochester in 10 days, is the world expert on Shy-Drager. I suppose I should say, he is the leading expert on dysautonomia, with Shy-Drager being one, and the worst, syndromes of the group. At least this is what Dr. Nance told Dennis.
Me, I am feeling somewhat better. At least I was able to get up today and shower. I have typed this entry and still have enough energy left to sit up for a bit longer. Tommorow I should feel good enough to even enjoy writing my entry.
Until Tommorow,
Ann and Dennis
But, as the saying goes, life goes on!
Dennis had a visit to his Parkinson's doctor on Thursday. Unfortunately, I was not able to go along, and his depression was not dealt with, once again. It's time to make an appointment with his general practitioner, who is warm and empathetic. Dr Nance, while an expert in Parkinson's, cannot be described using either of those words, even if you stretch the truth. She just poo-pooed his needing anti-depressants. My feeling is his life is tough enough right now. He shouldn't need to feel so depressed when there are perfectly good medications to help him.
He was able to find out, however, that Dr. Low, the doctor he will visit in Rochester in 10 days, is the world expert on Shy-Drager. I suppose I should say, he is the leading expert on dysautonomia, with Shy-Drager being one, and the worst, syndromes of the group. At least this is what Dr. Nance told Dennis.
Me, I am feeling somewhat better. At least I was able to get up today and shower. I have typed this entry and still have enough energy left to sit up for a bit longer. Tommorow I should feel good enough to even enjoy writing my entry.
Until Tommorow,
Ann and Dennis
Thursday, September 25, 2008
Change, Change, Change
Things are changing quickly, once again. Dennis diet is changing and so is his ability to swallow. His blood pressure was low again this afternoon (60 over 40 something) and his PCA (my friend, JoAnn) was frightened. She is a new, and reluctuant participant in the Shy-Drager care-system, but she tries hard and loves Dennis because I love him.
I do "change" easier than Dennis does "change". There are even times that I thrive on change. But I am getting tired of adjusting and I can't imagine how difficult it is for someone who finds change more than a bit challenging.
Tonight I came home, after finding out around 24 hours ago about the drastic change in diet, and made a well done pasta dish. I just had begun to help Dennis adopt and adapt to al dente pasta. We are now back to mushy pasta with ground meat, or smooshy veggie, sauce.
Change does not have to be difficult. All I really need to do is go back to the basics, perhaps. Over cook, chop, chop, chop and cook a bit longer. Add salt, pepper if you are feeling risky and then cook a bit longer. Still not mushy enough? Cook just a little while longer.
Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bad spell/grammer check (so sorry)
I do "change" easier than Dennis does "change". There are even times that I thrive on change. But I am getting tired of adjusting and I can't imagine how difficult it is for someone who finds change more than a bit challenging.
Tonight I came home, after finding out around 24 hours ago about the drastic change in diet, and made a well done pasta dish. I just had begun to help Dennis adopt and adapt to al dente pasta. We are now back to mushy pasta with ground meat, or smooshy veggie, sauce.
Change does not have to be difficult. All I really need to do is go back to the basics, perhaps. Over cook, chop, chop, chop and cook a bit longer. Add salt, pepper if you are feeling risky and then cook a bit longer. Still not mushy enough? Cook just a little while longer.
Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bad spell/grammer check (so sorry)
Wednesday, September 24, 2008
Changes
The results from Dennis' swallowing video have been reviewed and shared with him today. It looks like another major change for both of us.
The best news is the prognosis is good, with major changes in diet and the way he swallows.
He will receive 3 weeks of therapy with his speech pathologist for learning new methods to swallow. He will receive more exercises to do at home.
His therapist, Marjorie, has recommended two cookbooks for me to help with this major transition to his new diet. I assume a good blender is also going to become rather important to this new place in our lives.
The worst news, for Dennis, is that fresh fruit is out of the picture. The good news is that cooked fruits are okay, meaning pie filling is good for him. Does it count as a pie if you don't eat the crust?
Bread, is out, but syrup soaked pancakes are in. Soup is in, but only if it is creamy. There will be no more sandwiches allowed and red meat is a big no-no, unless I grind it all up.
This will be a big change for us, but a change that could extend his life. So that makes it all worth while.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a new diet
The best news is the prognosis is good, with major changes in diet and the way he swallows.
He will receive 3 weeks of therapy with his speech pathologist for learning new methods to swallow. He will receive more exercises to do at home.
His therapist, Marjorie, has recommended two cookbooks for me to help with this major transition to his new diet. I assume a good blender is also going to become rather important to this new place in our lives.
The worst news, for Dennis, is that fresh fruit is out of the picture. The good news is that cooked fruits are okay, meaning pie filling is good for him. Does it count as a pie if you don't eat the crust?
Bread, is out, but syrup soaked pancakes are in. Soup is in, but only if it is creamy. There will be no more sandwiches allowed and red meat is a big no-no, unless I grind it all up.
This will be a big change for us, but a change that could extend his life. So that makes it all worth while.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a new diet
Tuesday, September 23, 2008
My Strong Man
Dennis woke me up this morning with a song. He was off key by at least 2 1/2 notes, but he made me laugh. He is feeling better, much better, thank you very much.
Today, he and Raquel walked over the highway to the Medical Supply Store to fill his prescription for a saliva extractor. He actually walked all the way there and half of the way home, before needing to sit in the chair and be pushed. Tommorow he will return to the same clinic to have his catheter changed. His plan is to walk, once again.
Dennis also signed up for 2 groups at the Courage Center. The Courage Center is a center for advocating and providing for the disabled. They offer all types of classes, including several sports related groups, which interested Dennis.
He purchased some type of floor bike type pedaling contraption to keep his legs strong. He is lifting weights with Raquel. He walks in the house most of the time, always with the support of his chair or his walker.
Dennis has decided that he wants to live to 70. His prognosis is to live for 1 to 7 years, but he has determined that he will beat the odds and live beyond his life sentence.
Hooray for this man's courage and fortitude. I admire his desire to work as hard as possible to live a long and happy life. I do love this man. How could I do anything else?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Dennis' will to live.
Today, he and Raquel walked over the highway to the Medical Supply Store to fill his prescription for a saliva extractor. He actually walked all the way there and half of the way home, before needing to sit in the chair and be pushed. Tommorow he will return to the same clinic to have his catheter changed. His plan is to walk, once again.
Dennis also signed up for 2 groups at the Courage Center. The Courage Center is a center for advocating and providing for the disabled. They offer all types of classes, including several sports related groups, which interested Dennis.
He purchased some type of floor bike type pedaling contraption to keep his legs strong. He is lifting weights with Raquel. He walks in the house most of the time, always with the support of his chair or his walker.
Dennis has decided that he wants to live to 70. His prognosis is to live for 1 to 7 years, but he has determined that he will beat the odds and live beyond his life sentence.
Hooray for this man's courage and fortitude. I admire his desire to work as hard as possible to live a long and happy life. I do love this man. How could I do anything else?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Dennis' will to live.
Monday, September 22, 2008
Saliva, Once Again
I must go back, soon, and count how many of my blog entries concern drooling. It is one of the troublesome symptoms for Dennis. It affects his speech, his eating, and his desire to eat a meal with others. It embarrasses him, too.
The pills that work for so many, according to his doctor's nurse, do not work for him. The eye drops that have the surprise affect of cutting down on saliva, are not working either. Today, after work, I will stop at the hospital health store and fill his prescription for a home suction unit.
I know that this is not a life threatening symptom, at least not at the moment. So many of his other issues are more important, health wise, to manage. But this one, this icky saliva issue, affects his quality of life more than the others.
We are both hoping that this suction thing will work. If it doesn't, all that is left to try is Botox shots to freeze the glands.
I am afraid, if he has to turn to Botox, that he will come out looking like Cher or Micheal. Ick!
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and saliva, and saliva, and saliva
The pills that work for so many, according to his doctor's nurse, do not work for him. The eye drops that have the surprise affect of cutting down on saliva, are not working either. Today, after work, I will stop at the hospital health store and fill his prescription for a home suction unit.
I know that this is not a life threatening symptom, at least not at the moment. So many of his other issues are more important, health wise, to manage. But this one, this icky saliva issue, affects his quality of life more than the others.
We are both hoping that this suction thing will work. If it doesn't, all that is left to try is Botox shots to freeze the glands.
I am afraid, if he has to turn to Botox, that he will come out looking like Cher or Micheal. Ick!
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and saliva, and saliva, and saliva
Sunday, September 21, 2008
Saturday Breakfast
My house cleaner, Leticia, comes every other Saturday morning and stays for a few hours. Dennis and I take this opportunity to go out for breakfast and do one or two errands. We could do more, but I firmly stand by my rule of no more than eight wheelchair transfers in one day.
I seldom read the paper, and when I do, it’s usually the variety section and maybe I will read a comic strip, or two. I simply do not care to read about everything that is going wrong in the world. I even dislike the paper more right now, because of politics. After all, I made up my mind a long time ago about who gets all of my votes this November.
By now you know that Dennis is a s-l-o-w eater. He is also a big eater, when he can eat. I am not a big breakfast eater and matter how hard I try to slow down, I am still done way before him. This means a very long time in the restaurant to sit and watch Dennis eat. Thus, the newspaper gets read from front to back simply to maintain my sanity. Thankfully, the Saturday paper is more entertainment than news, and the fluffy stuff is easy to forget, minutes after you have finished reading.
Okay, so enough about me.
As Dennis eats slowly, he also spills and splatters and makes a big, old mess. Occasionally, I lean over with a wet napkin and wipe his face off. All in all, we have worked out a simple system to keep Dennis from looking like a complete mess when he eats.
Yesterday, Dennis ordered a blueberry muffin to go along with his corned beef and hash, hash browns, and two eggs. An hour and a half later, he was done, the bill way paid and I pulled his chair out from the table. In his lap, was half of a blueberry muffin, the paper from the muffin, and a few odd and ends bit of hash browns.
The newspaper, which kept me from crawling the walls while he ate, now served a second purpose. I laid the paper on his lap and wheeled him casually out of the restaurant. When he stood up to get in the car, he left a very nice breakfast for a few of the local squirrels and birds on the ground. Very generous of him, don’t you think?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Sweet Saturday Mornings
I seldom read the paper, and when I do, it’s usually the variety section and maybe I will read a comic strip, or two. I simply do not care to read about everything that is going wrong in the world. I even dislike the paper more right now, because of politics. After all, I made up my mind a long time ago about who gets all of my votes this November.
By now you know that Dennis is a s-l-o-w eater. He is also a big eater, when he can eat. I am not a big breakfast eater and matter how hard I try to slow down, I am still done way before him. This means a very long time in the restaurant to sit and watch Dennis eat. Thus, the newspaper gets read from front to back simply to maintain my sanity. Thankfully, the Saturday paper is more entertainment than news, and the fluffy stuff is easy to forget, minutes after you have finished reading.
Okay, so enough about me.
As Dennis eats slowly, he also spills and splatters and makes a big, old mess. Occasionally, I lean over with a wet napkin and wipe his face off. All in all, we have worked out a simple system to keep Dennis from looking like a complete mess when he eats.
Yesterday, Dennis ordered a blueberry muffin to go along with his corned beef and hash, hash browns, and two eggs. An hour and a half later, he was done, the bill way paid and I pulled his chair out from the table. In his lap, was half of a blueberry muffin, the paper from the muffin, and a few odd and ends bit of hash browns.
The newspaper, which kept me from crawling the walls while he ate, now served a second purpose. I laid the paper on his lap and wheeled him casually out of the restaurant. When he stood up to get in the car, he left a very nice breakfast for a few of the local squirrels and birds on the ground. Very generous of him, don’t you think?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Sweet Saturday Mornings
Saturday, September 20, 2008
Fever
It has been a very difficult week. First the problems with the catheter, then very little sleep for either of us for two nights. By Friday morning I was exhausted, but Dennis was in less pain. The bleeding has also stopped.
When I came home Friday, Dennis was laying in bed shivering, under our very warm down comforter. The cover was actually jumping around with his shivers. At the same time his face was burning up. I don't know his actual temperature, our digital thermometer had run out of steam, but I know he was above normal.
I covered him up in another quilt, and gave him a sleeping pill. A few hours later his fever broke, and he was able to sleep through the night.
We haven't said it aloud to each other, yet, but I believe we are both concerned that he is beginning to lose the ability to regulate his body temperature. I sure hope I am wrong about this. I don't want to expect the worst, but these days, the impossible seems possible.
Tommorow, a lighter entry. I promise.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and an unfair disease
When I came home Friday, Dennis was laying in bed shivering, under our very warm down comforter. The cover was actually jumping around with his shivers. At the same time his face was burning up. I don't know his actual temperature, our digital thermometer had run out of steam, but I know he was above normal.
I covered him up in another quilt, and gave him a sleeping pill. A few hours later his fever broke, and he was able to sleep through the night.
We haven't said it aloud to each other, yet, but I believe we are both concerned that he is beginning to lose the ability to regulate his body temperature. I sure hope I am wrong about this. I don't want to expect the worst, but these days, the impossible seems possible.
Tommorow, a lighter entry. I promise.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and an unfair disease
Friday, September 19, 2008
The Blood is Done
Bloody Wednesday went well into the wee hours Thursday morning. I won't go into the horrid details, but at 1:00 AM I finally turned on my computer so I could request a sub for the day. We were planning on going to Urgent Care as soon as they opened in the morning.
Dennis was up, keeping me awake, naturally, all night. He was drinking water, flushing everything out, and emptying his bag constantly. I don't suppose I need to mention that he was groaning loudly all the time. After all, he was dealing with his very manhood. Finally, around six o'clock, things were looking back to normal, and we knew we did not need to go to Urgent Care.
It ended up being a long night, with a few minor falls, lots of clean-up needed in the morning, but at least we did not end up in the hospital.
A girl can always be grateful for any day not spent in the hospital waiting room.
Until tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a lot less blood
Dennis was up, keeping me awake, naturally, all night. He was drinking water, flushing everything out, and emptying his bag constantly. I don't suppose I need to mention that he was groaning loudly all the time. After all, he was dealing with his very manhood. Finally, around six o'clock, things were looking back to normal, and we knew we did not need to go to Urgent Care.
It ended up being a long night, with a few minor falls, lots of clean-up needed in the morning, but at least we did not end up in the hospital.
A girl can always be grateful for any day not spent in the hospital waiting room.
Until tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a lot less blood
Thursday, September 18, 2008
Bloody Wednesday
I came home from work today to a sickly boy and a bloody bed. Seems Dennis' catheter had partially pulled out and had to be pushed in by an inexperienced PCA. He had quite a bit of bleeding, both in and outside of the catheter. He was also in a ton of pain.
Dennis has never been great with pain, but this must be extremely horrid for him. Not being a guy, I can't imagine, but I guess I would compare it to labor pains. Since I have never had children, I can't really be completely sympathetic, but I do have lots of empathy for him.
I arranged him in bed every which way for about an hour. First we put a pillow under one leg, then both legs. That didn't seem to help. An ice pack and a handful of Advil didn't do much for him, either. Sitting up with the new bed pillow wasn't cutting it, and neither was laying down. Finally, I gave him a sleeping pill, shut the blinds and ordered him to sleep. He is laying on his side, ice pack carefully placed, and pillows arranged to keep him in place.
There is an alternative out there, to the catheter and foley bag, but it involves surgery. Surgery really is not an option for Dennis.
I want to make this all better for him, take away his pain and make him whole again. Today it is difficult to accept that I am unable to do any of this.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and lots of pain and blood
Dennis has never been great with pain, but this must be extremely horrid for him. Not being a guy, I can't imagine, but I guess I would compare it to labor pains. Since I have never had children, I can't really be completely sympathetic, but I do have lots of empathy for him.
I arranged him in bed every which way for about an hour. First we put a pillow under one leg, then both legs. That didn't seem to help. An ice pack and a handful of Advil didn't do much for him, either. Sitting up with the new bed pillow wasn't cutting it, and neither was laying down. Finally, I gave him a sleeping pill, shut the blinds and ordered him to sleep. He is laying on his side, ice pack carefully placed, and pillows arranged to keep him in place.
There is an alternative out there, to the catheter and foley bag, but it involves surgery. Surgery really is not an option for Dennis.
I want to make this all better for him, take away his pain and make him whole again. Today it is difficult to accept that I am unable to do any of this.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and lots of pain and blood
Wednesday, September 17, 2008
Out and About
The weather has been perfect this week, in Minnesota. The temps are in the mid-70's and the sun has been shining brightly. Who could ask for anything more?
Yesterday Dennis and Raquel went to Miracle Mile. It's one of the original strip malls in the states. It has changed over the years, but it has managed to keep every store front filled for over 30 years. It is also just a hop, skip and a jump from our new home.
I love that Dennis wants to get out and about. Even more so, I am excited when he is willing to go places without me. Dennis has trust issues, and he is trusting Raquel more and more every day. Just last week, he let her walk with him to a hair stylist shop in our 'hood. He takes his wheel chair and uses it as a walker. This gives them both a safety net. If he gets tired, he can always sit in the chair and be pushed.
He is a man with tons of gumption. He is a man with tons of pride. He is the man of my dreams.
I am a lucky woman.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Love and Admiration for each other
Yesterday Dennis and Raquel went to Miracle Mile. It's one of the original strip malls in the states. It has changed over the years, but it has managed to keep every store front filled for over 30 years. It is also just a hop, skip and a jump from our new home.
I love that Dennis wants to get out and about. Even more so, I am excited when he is willing to go places without me. Dennis has trust issues, and he is trusting Raquel more and more every day. Just last week, he let her walk with him to a hair stylist shop in our 'hood. He takes his wheel chair and uses it as a walker. This gives them both a safety net. If he gets tired, he can always sit in the chair and be pushed.
He is a man with tons of gumption. He is a man with tons of pride. He is the man of my dreams.
I am a lucky woman.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Love and Admiration for each other
Monday, September 15, 2008
Slow
"I am getting slower", Dennis mentioned to me the other day. I suppose he is, although since I am with him everyday, I am not sure how much I notice the degree of his slowness.
Dennis used to be quick. He was a darn good tennis player, or so he tells me. Personally, I know nothing about the sport. I do know that he played doubles every week, and his team often one.
When he was slow about something, it was more about being methodical. Paying bills, for example, always took a bit of time, but there was a pattern and method behind the way he read then payed the bill.
I have mentioned how slowly he eats, and how long it takes him to get dressed before. There are other places he has slowed down, and they seem to be troublesome to him.
Getting in and out of the car, for example, has become a time consuming event. Moving from one setting to another usually takes quite a chunk of time. Dressing, showering, simply turning on the computer have begun to use up quite a bit of his day.
Dennis really wants to help out and do his fair share of work. It is difficult for me not to do everything. It's not that I want to do it all, I do not, but I hate to see him struggle with everything. I want everything to be easy, again, for my hunney bunney, and I just know they never will be, again.
Until Tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy
Dennis used to be quick. He was a darn good tennis player, or so he tells me. Personally, I know nothing about the sport. I do know that he played doubles every week, and his team often one.
When he was slow about something, it was more about being methodical. Paying bills, for example, always took a bit of time, but there was a pattern and method behind the way he read then payed the bill.
I have mentioned how slowly he eats, and how long it takes him to get dressed before. There are other places he has slowed down, and they seem to be troublesome to him.
Getting in and out of the car, for example, has become a time consuming event. Moving from one setting to another usually takes quite a chunk of time. Dressing, showering, simply turning on the computer have begun to use up quite a bit of his day.
Dennis really wants to help out and do his fair share of work. It is difficult for me not to do everything. It's not that I want to do it all, I do not, but I hate to see him struggle with everything. I want everything to be easy, again, for my hunney bunney, and I just know they never will be, again.
Until Tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy
Saturday, September 13, 2008
Dennis Misses Me
Dennis got a big old case of the "lonilies" this week. I came home from work each day, just a bit more exhausted, as my cold also worsened. He just wanted to spend time with me, and I needed to spend time sleeping.
It looks, however, that we may soon be spending a week together in Rochester. Oh the other hand, it may end up being one day now and a week, again, later. The letters and emails have not been overly specific. I imagine we will need to make a phone call this week to finalize everything.
We have also booked our airline tickets for London. We will leave the weekend before Thanksgiving and will stay for the whole next week, also. This gives another two solid weeks together.
Of course, winter break will come a few weeks after we return from England. Add on another two weeks to our spending quality time together.
So, my dear Dennis, you may miss me right now, but by the end of December, I am sure that you will have had your fill of me. I love you, sweetie.
It looks, however, that we may soon be spending a week together in Rochester. Oh the other hand, it may end up being one day now and a week, again, later. The letters and emails have not been overly specific. I imagine we will need to make a phone call this week to finalize everything.
We have also booked our airline tickets for London. We will leave the weekend before Thanksgiving and will stay for the whole next week, also. This gives another two solid weeks together.
Of course, winter break will come a few weeks after we return from England. Add on another two weeks to our spending quality time together.
So, my dear Dennis, you may miss me right now, but by the end of December, I am sure that you will have had your fill of me. I love you, sweetie.
Friday Woes
I woke up about 1:30 am with an ear ache. I haven't had one of those in years. Since it was pounding so hard, I finally got up, took one of Dennis' "light" narcotic sleeping pills and moved to the couch. I konked out, and decided not to go to work on Friday.
Kismet, it turns out. Raquel showed up late, again. I believe she parties rather hard on Thursday nights, because she often shows up late on Fridays. I stayed in bed, but she arrived about 9:30, according to Dennis. She is suppose to be here at 8:00. Dennis surprised her by telling her to go home, that I had stayed home for the day because she was late.
It is difficult for both of us to be hard on people. We both look for the best in others. The problem is, we just talked with her last Monday, because she had been late last Friday, too. I gave her a hard talk when she came on Monday. I was surprised she was late, once again, so soon.
Dennis told her he would love to see her on Monday, at 8:00, but if she could not be there by that time, not to bother. Maybe this time, she will get the message.
By the way, my ear ache has cleared up and I am just left with the yucky parts of a cold. Oh, well.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Autonomic Disorders and a cold
Kismet, it turns out. Raquel showed up late, again. I believe she parties rather hard on Thursday nights, because she often shows up late on Fridays. I stayed in bed, but she arrived about 9:30, according to Dennis. She is suppose to be here at 8:00. Dennis surprised her by telling her to go home, that I had stayed home for the day because she was late.
It is difficult for both of us to be hard on people. We both look for the best in others. The problem is, we just talked with her last Monday, because she had been late last Friday, too. I gave her a hard talk when she came on Monday. I was surprised she was late, once again, so soon.
Dennis told her he would love to see her on Monday, at 8:00, but if she could not be there by that time, not to bother. Maybe this time, she will get the message.
By the way, my ear ache has cleared up and I am just left with the yucky parts of a cold. Oh, well.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, Autonomic Disorders and a cold
Friday, September 12, 2008
More About Saliva
I picked up a new prescription today for Dennis. It is actually an eye drop, but it seems to work for controlling excessive drooling, too. We don't care what it was originally made for, we just hope it works.
I was finally able to make contact with the nurses at the Struthers's Clinic. We talked about saliva pumps, this new med, depression and blah, blah, blah. I am pleased that the staff at the clinic really worked hard to find new solutions to this exasperating problem.
Dennis has also been scheduled for a video swallowing session at the hospital. We have no idea what this involves, but I am imagining all sorts of things that I never thought about previously. Do they put a camera down his throat? Do they measure the amount of saliva produced and then swallowed? It seems a peculiar test to me, but one I am anxious to learn more about.
I hope we will find an answer to the saliva issue. I have discovered that both of us can deal with answers that work, no matter how weird they may seem to the rest of the world. Just, please, keep managing the symptoms. We can live with the responses.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Drooling and Saliva
I was finally able to make contact with the nurses at the Struthers's Clinic. We talked about saliva pumps, this new med, depression and blah, blah, blah. I am pleased that the staff at the clinic really worked hard to find new solutions to this exasperating problem.
Dennis has also been scheduled for a video swallowing session at the hospital. We have no idea what this involves, but I am imagining all sorts of things that I never thought about previously. Do they put a camera down his throat? Do they measure the amount of saliva produced and then swallowed? It seems a peculiar test to me, but one I am anxious to learn more about.
I hope we will find an answer to the saliva issue. I have discovered that both of us can deal with answers that work, no matter how weird they may seem to the rest of the world. Just, please, keep managing the symptoms. We can live with the responses.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Drooling and Saliva
Thursday, September 11, 2008
Delivery
I believe we have finally found our pizza place in our new neighborhood. After living in the inner city for so long, we both are pizza spoiled. There are so many small pizza joints in the city, and they are usually terrific. In the 'burbs, although we are only 3 miles out, it is pretty much chain restaurants or mediocre hamburger joints.
We are semi-food junkies. We like fresh ingredients, and we both hate the dull and mundane in our food. We don't eat delivery very often, but Wednesdays and Fridays are my difficult days, and ready made or delivery comes in handy once in a while. I know, this makes me sound lazy, but I like to think of it as realistic.
There is a great grocery store near us that sells daily dinners, for when I am feeling lazy, but they are, at best, acceptable. The meals fill us, but there is only a little joy when we are actually consuming the dinner. I have used them once or twice for dinners, but they are not cutting it for me.
The pizza joint we found today has been a staple of the University area of Minneapolis for years. I have eaten take out, delivery and eat-in pizza and hoagies at the original spot for many years. I have never been disappointed in their product in the past, and I wasn't this time, either.
I know, this is no big deal, but it is important to know where to reach out when you only have so much energy left. Today, the only left over energy I had was to dial that telephone number. And today, they delivered exactly what we needed - a good product at a fair price.
We are semi-food junkies. We like fresh ingredients, and we both hate the dull and mundane in our food. We don't eat delivery very often, but Wednesdays and Fridays are my difficult days, and ready made or delivery comes in handy once in a while. I know, this makes me sound lazy, but I like to think of it as realistic.
There is a great grocery store near us that sells daily dinners, for when I am feeling lazy, but they are, at best, acceptable. The meals fill us, but there is only a little joy when we are actually consuming the dinner. I have used them once or twice for dinners, but they are not cutting it for me.
The pizza joint we found today has been a staple of the University area of Minneapolis for years. I have eaten take out, delivery and eat-in pizza and hoagies at the original spot for many years. I have never been disappointed in their product in the past, and I wasn't this time, either.
I know, this is no big deal, but it is important to know where to reach out when you only have so much energy left. Today, the only left over energy I had was to dial that telephone number. And today, they delivered exactly what we needed - a good product at a fair price.
Wednesday, September 10, 2008
New Interventions
The nurses at the Struthers's Clinic have been working hard just to find solutions to Dennis' swallowing problems. No one is thrilled about him taking so much Rubinol to control his drooling, since it has the potential to lower his blood pressure even more. In addition to that, it does not appear to be working as well as we would hope.
Today one of the nurses called me and told me that we should try a new medication. It actually is for eyes, but somehow, if put under the tongue, it also works, for some, on controlling drooling and excessive saliva. He is also scheduled for a swallowing video session at the hospital. Neither of us has any clue what this involves, but Dennis is more than ready to give it a go.
I am amazed, sometimes, how much people are agreeable to help Dennis. So often, we focus on what doesn't work in health care. I can attest to the fact that there are many individuals are out here, wanting only to help others. We have found most people want to be humane and treat each individual case as exactly what it is - individual.
As skeptical as I am, I must say I am pleased with what I have seen happen, for Dennis, in our medical system. I will never say I like the final outcome, but I am pleased with the care he has received, so far.
Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy Drager and new possiblities
Today one of the nurses called me and told me that we should try a new medication. It actually is for eyes, but somehow, if put under the tongue, it also works, for some, on controlling drooling and excessive saliva. He is also scheduled for a swallowing video session at the hospital. Neither of us has any clue what this involves, but Dennis is more than ready to give it a go.
I am amazed, sometimes, how much people are agreeable to help Dennis. So often, we focus on what doesn't work in health care. I can attest to the fact that there are many individuals are out here, wanting only to help others. We have found most people want to be humane and treat each individual case as exactly what it is - individual.
As skeptical as I am, I must say I am pleased with what I have seen happen, for Dennis, in our medical system. I will never say I like the final outcome, but I am pleased with the care he has received, so far.
Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy Drager and new possiblities
Tuesday, September 9, 2008
Mayo Calls Again
The news came today, via email. Dennis has been accepted for the Multiple System Atrophy/Shy-Drager study at the Mayo. We will be in Rochester for three days for several tests and studies. They will pick up the bill for all the work done in the study and a hotel room.
A three day vacation! Whoopie! Oh, and more information to give to all of you! And more tests to give to you, my loyal readers. I am loving this!
Dennis was sent a 10 page form to sign, with every test and procedure outlined. Some of the tests I can understand, a few, I have a vague idea of what they are talking about, and others totally confuse me. What cracks me up is, they bothered to tell us that 40 ml of blood equals approximately 3 tablespoons of blood, but they didn't explain catacholamines.
I imagine the docs don't believe we would ever understand, so why bother. Hmmm, they don't know me, do they?
Dennis is, expectedly, very pleased. He feels that knowing where he is on the life expectancy spectrum will make him feel better. I am pleased that he will be seen by someone who specializes in this strange and rare disease. I am sure the doctors are searching for answers, and they will be pleased to have one more person to study. Perhaps, the world at large will one day be pleased because there are answers that won't lead to a death sentence.
All in all, I would say this is good news for a whole lot of people.
Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy-Drager and good news
A three day vacation! Whoopie! Oh, and more information to give to all of you! And more tests to give to you, my loyal readers. I am loving this!
Dennis was sent a 10 page form to sign, with every test and procedure outlined. Some of the tests I can understand, a few, I have a vague idea of what they are talking about, and others totally confuse me. What cracks me up is, they bothered to tell us that 40 ml of blood equals approximately 3 tablespoons of blood, but they didn't explain catacholamines.
I imagine the docs don't believe we would ever understand, so why bother. Hmmm, they don't know me, do they?
Dennis is, expectedly, very pleased. He feels that knowing where he is on the life expectancy spectrum will make him feel better. I am pleased that he will be seen by someone who specializes in this strange and rare disease. I am sure the doctors are searching for answers, and they will be pleased to have one more person to study. Perhaps, the world at large will one day be pleased because there are answers that won't lead to a death sentence.
All in all, I would say this is good news for a whole lot of people.
Until tomorrow,
Ann and Dennis
Living with Multiple System Atrophy, Shy-Drager and good news
Monday, September 8, 2008
Dennis Friendly Furniture
We closed on our old home a week ago. We came out with a bit of cash, so we decided to spend it on shades for all of our windows and Dennis friendly furniture. So what is Dennis friendly furniture, I hear you asking.
First of all, it is not comfy, curl up on your couch type of stuff. Right now, until the new furniture is delivered, we have an overstuffed chair and a half and a couch. If we pile up a pillow, then a hard seat from an office chair, and another pillow, he can sometimes sit on one end of the couch. But, if he is having a tipping over type of day, even that won't work. And forget the oversized chair. That chair almost eats him up. Once he is in that chair, there is no getting out without lots of help.
Second, Dennis friendly furniture is not covered in man made fabric of any type. No matter how many times I ask him to not eat in bed or on the furniture, it keeps happening. And, since he is a messy eater, the furniture must be incredibly stain resistant.
So, it's highly structured leather furniture that we ended up buying. He can slide his butt forward on the new chair and the arms are stiff, and at the right height to complete the process of standing up. In addition, being leather, it can be wiped up easier than woven fabric. At least, that is what I am hoping.
In a few weeks, we will have almost everything we want to make our new condo comfy and warm. The best part is that we actually had the money, from the sale, to purchase everything, paid in full. Cool.
Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and (pretty soon) Dennis friendly furniture
First of all, it is not comfy, curl up on your couch type of stuff. Right now, until the new furniture is delivered, we have an overstuffed chair and a half and a couch. If we pile up a pillow, then a hard seat from an office chair, and another pillow, he can sometimes sit on one end of the couch. But, if he is having a tipping over type of day, even that won't work. And forget the oversized chair. That chair almost eats him up. Once he is in that chair, there is no getting out without lots of help.
Second, Dennis friendly furniture is not covered in man made fabric of any type. No matter how many times I ask him to not eat in bed or on the furniture, it keeps happening. And, since he is a messy eater, the furniture must be incredibly stain resistant.
So, it's highly structured leather furniture that we ended up buying. He can slide his butt forward on the new chair and the arms are stiff, and at the right height to complete the process of standing up. In addition, being leather, it can be wiped up easier than woven fabric. At least, that is what I am hoping.
In a few weeks, we will have almost everything we want to make our new condo comfy and warm. The best part is that we actually had the money, from the sale, to purchase everything, paid in full. Cool.
Until tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and (pretty soon) Dennis friendly furniture
Sunday, September 7, 2008
Sunday, Awful Sunday
Today is the worst day of my life. Actually, I have had approximately 50 of these horrible days. It's the first, of way too many, football Sundays. If that is not enough to push a sports hater into a deep depression, tomorrow is Monday Night Football! Oh, yay.
So begins my season of hiding in the bedroom, Sunday shopping and cooking. The cooking thing worked well at our old home because the kitchen was actually in a separate room. Now, though, our kitchen is about 10 feet away from our monstrosity of a television set. Naturally, Dennis is in his office, merely listening to the TV, so the volume is on extra loud.
I have never enjoyed sports, but football is by far one of the stupidest sports that I can possibly imagine being played. Everyone yells throughout the complete game. Either it's "Go, go, go!" or "Boo, boo, boo." Even the announcers shout. Don't they know they have a microphone sitting in front of their faces?
Then there are the breaks. It appears that football players must not be very bright, because every other play, they seem to need a pause to speak with the big guy. Meanwhile, the rest of us are required to view the last play over, and over, and over. As if watching the repeat of a 7 second play isn't dreadful enough, we also have to endure all that shrieking by the announcers, again.
Okay, Dennis will tell me tomorrow, after he has read this, that I am whining, once again. I suppose I am. But no matter how many times he tells me I am whining, I will never, ever like such a foolish sport. At least not until I make as much money as that fellow sitting on the side lines. He never has to play because he got injured. Now that's a position in football that I could, maybe, enjoy. And then, maybe, just maybe, I could stare at a game. Of course, the volume would have to be turned off.
Until tomorrow,
Ann (and Dennis)
Living with Shy-Drager and Multiple System Atrophy
So begins my season of hiding in the bedroom, Sunday shopping and cooking. The cooking thing worked well at our old home because the kitchen was actually in a separate room. Now, though, our kitchen is about 10 feet away from our monstrosity of a television set. Naturally, Dennis is in his office, merely listening to the TV, so the volume is on extra loud.
I have never enjoyed sports, but football is by far one of the stupidest sports that I can possibly imagine being played. Everyone yells throughout the complete game. Either it's "Go, go, go!" or "Boo, boo, boo." Even the announcers shout. Don't they know they have a microphone sitting in front of their faces?
Then there are the breaks. It appears that football players must not be very bright, because every other play, they seem to need a pause to speak with the big guy. Meanwhile, the rest of us are required to view the last play over, and over, and over. As if watching the repeat of a 7 second play isn't dreadful enough, we also have to endure all that shrieking by the announcers, again.
Okay, Dennis will tell me tomorrow, after he has read this, that I am whining, once again. I suppose I am. But no matter how many times he tells me I am whining, I will never, ever like such a foolish sport. At least not until I make as much money as that fellow sitting on the side lines. He never has to play because he got injured. Now that's a position in football that I could, maybe, enjoy. And then, maybe, just maybe, I could stare at a game. Of course, the volume would have to be turned off.
Until tomorrow,
Ann (and Dennis)
Living with Shy-Drager and Multiple System Atrophy
Saturday, September 6, 2008
The Weekend
My sister Jane, and her husband, Ralph, are in Minneapolis from London, for a few weeks. Last night we got together for dinner at our new condo. They stayed quite late, at least for me, and Dennis, and I slept in this morning. I haven't slept until 8:00 for quite a while.
I could have stayed in bed all day, but Laticia, our bi-monthly house cleaner, was coming this morning, so we had to get up. She is so wonderful, and I love the way the condo looks when she has finished polishing, vacuuming and scrubbing the place. I also enjoy spending a few minutes, just catching up with her life.
I could do my own cleaning, but knowing that I can have five hours free, twice a month, is worth any price we pay. Dennis and I now go out for a long breakfast twice a month and then do errands with each other. Then I sit on my behind for the rest of the day. I love these Saturdays.
Today, we spent the last of our small profit from selling the house. We purchased honeycomb blinds for the condo. Although we love these huge windows, we also know the sun will bleach out our furniture and rugs. It also interferes with watching TV on our oversized, expensive and digital, surround sound set up.
I know this post has covered a whole bunch of topics, and it is a bit rambling. Well, perhaps more than a bit rambling. I guess, just to put a rope around this post, I am trying to say that today life is great. I have my sis here, a great house-cleaner, brand new blinds coming, and I had the time to write this post.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bit of time on our hands.
I could have stayed in bed all day, but Laticia, our bi-monthly house cleaner, was coming this morning, so we had to get up. She is so wonderful, and I love the way the condo looks when she has finished polishing, vacuuming and scrubbing the place. I also enjoy spending a few minutes, just catching up with her life.
I could do my own cleaning, but knowing that I can have five hours free, twice a month, is worth any price we pay. Dennis and I now go out for a long breakfast twice a month and then do errands with each other. Then I sit on my behind for the rest of the day. I love these Saturdays.
Today, we spent the last of our small profit from selling the house. We purchased honeycomb blinds for the condo. Although we love these huge windows, we also know the sun will bleach out our furniture and rugs. It also interferes with watching TV on our oversized, expensive and digital, surround sound set up.
I know this post has covered a whole bunch of topics, and it is a bit rambling. Well, perhaps more than a bit rambling. I guess, just to put a rope around this post, I am trying to say that today life is great. I have my sis here, a great house-cleaner, brand new blinds coming, and I had the time to write this post.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and a bit of time on our hands.
My Sister is Home, for a While
My sis and bro-in-law are here, in Minneapolis, for the next two weeks. They live in London and we don't see enough of each other. They have not seen our new place, or met our new kitty, Shiva. We will have lots of stuff to catch up on, but mostly, it's just about hanging out together.
Jane and I have had our ups and downs, like any sisters do. But, for the most part, we have always gotten along. We have been there for each other when life stinks and when life is worth celebrating. We have, for the most part, accepted each other's partners, and supported each other when partners have been great or not so great.
Right now, we both have wonderful partners. Ralph, Jane's new husband, is adorable. Furthermore, he has this really cute English accent. What is best, however, about Ralph, is that he loves my sister.
Jane also adores Dennis. And, lucky enough, Dennis thinks she is pretty great, too. They have been there for each other in many ways over the past few years.
Jane and Ralph have many commitments while they are back here, in Minneapolis. Hamed, my parents, us, friends and just staying alive will keep them pretty busy. But for a few weeks, I will have my sister in town, Dennis will have one of his best friends in town, and we will both have Ralph around to make fun of, in our Minnesota nice way.
It's nice to have family.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and far away family at home, for a bit
Jane and I have had our ups and downs, like any sisters do. But, for the most part, we have always gotten along. We have been there for each other when life stinks and when life is worth celebrating. We have, for the most part, accepted each other's partners, and supported each other when partners have been great or not so great.
Right now, we both have wonderful partners. Ralph, Jane's new husband, is adorable. Furthermore, he has this really cute English accent. What is best, however, about Ralph, is that he loves my sister.
Jane also adores Dennis. And, lucky enough, Dennis thinks she is pretty great, too. They have been there for each other in many ways over the past few years.
Jane and Ralph have many commitments while they are back here, in Minneapolis. Hamed, my parents, us, friends and just staying alive will keep them pretty busy. But for a few weeks, I will have my sister in town, Dennis will have one of his best friends in town, and we will both have Ralph around to make fun of, in our Minnesota nice way.
It's nice to have family.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and far away family at home, for a bit
Friday, September 5, 2008
Don't you hate the game of phone tag?
After Dennis' day of not being able to communicate, I called the Struthers's Nurse Line to see if we could find a new medication to deal with his drooling issue. He had talked to a nurse at the clinic, but she could not understand him. I called when I returned home from work, but, naturally, they were done with work, too. Consequently, I left a message, on his behalf, and asked them to return my call.
They returned my call at 9:00, when I was working. It is also when they are working. It is, as well, the time when I am unavailable to take phone calls. It is the same time they are unavailable to take phone calls. Therefore, we play this new age game called "phone tag."
When I am at work, I am lucky if I remember to eat my lunch. I am having a great day if I remember to drop our mail off in the mail bucket at work. I do not have time to think about my home life. Yet, everyone expects me to do both. I am supposed to make appointments, between 9 and 5, for dentists, cat care, Dennis care, oil changes, nurse line calls, and blah, blah, blah. At the same time I am supposed to do my job.
Okay, everyone that works goes through this experience. We all work the same hours, and we all are busy when we are working. We all play phone tag and, I suspect, we all hate the game. I am not used to being a care-giver. Care-givers, be it parents, boomers taking care of parents, animal lovers or whatever, all have to be available 24-7. My only question is why is 24-7 communication always between 8 and 5? Please, I need answers to how to be every thing to everyone, all of the time, and especially between 8 and 5. And, what are the rules of phone tag?????
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and phone tag games
After Dennis' day of not being able to communicate, I called the Struthers's Nurse Line to see if we could find a new medication to deal with his drooling issue. He had talked to a nurse at the clinic, but she could not understand him. I called when I returned home from work, but, naturally, they were done with work, too. Consequently, I left a message, on his behalf, and asked them to return my call.
They returned my call at 9:00, when I was working. It is also when they are working. It is, as well, the time when I am unavailable to take phone calls. It is the same time they are unavailable to take phone calls. Therefore, we play this new age game called "phone tag."
When I am at work, I am lucky if I remember to eat my lunch. I am having a great day if I remember to drop our mail off in the mail bucket at work. I do not have time to think about my home life. Yet, everyone expects me to do both. I am supposed to make appointments, between 9 and 5, for dentists, cat care, Dennis care, oil changes, nurse line calls, and blah, blah, blah. At the same time I am supposed to do my job.
Okay, everyone that works goes through this experience. We all work the same hours, and we all are busy when we are working. We all play phone tag and, I suspect, we all hate the game. I am not used to being a care-giver. Care-givers, be it parents, boomers taking care of parents, animal lovers or whatever, all have to be available 24-7. My only question is why is 24-7 communication always between 8 and 5? Please, I need answers to how to be every thing to everyone, all of the time, and especially between 8 and 5. And, what are the rules of phone tag?????
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and phone tag games
Thursday, September 4, 2008
Dennis' drooling has gone from frustrating to exasperating. He can't seem to utter even two words without having to swallow. Yesterday, he was unable to communicate with the bank and make the transfers to pay-off our loans. Today, when I came home, he was attempting to talk to a nurse at Struther's, his clinic, and they could not comprehend anything he was saying.
He had been begging for help with the drooling. The medicine he is taking is no longer working, but they have limited medications for this problem. His Parkinson's doctor is reticent to give him a stronger dose, due to blood pressure concerns. His general practitioner, however, did encourage him to increase the dose and experiment. The whole point is moot however, the medicine simply does not work, anymore.
Dennis carries a towel with him, almost every where he goes these days. This towel is just to mop up the drool that is continuously sliding out of his mouth. As I have mentioned before, he is not much fun to watch eat, and most of this is due to the drool.
This is really getting exasperating, for both of us. I want, so much, to understand all that he says to me. I desire to enjoy a meal with him without cleaning his face three or four times. I need to be able to go out to eat with him, without anyone either staring at him, or avoiding looking at him. I hope to have a conversation with him without asking him, three or four times, to repeat himself. I wish that he could be understood by others, so that I am not always interpreting for him. I need him to feel capable, once again, and not always dependent on someone else.
Is this asking too much?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and way too much drool
He had been begging for help with the drooling. The medicine he is taking is no longer working, but they have limited medications for this problem. His Parkinson's doctor is reticent to give him a stronger dose, due to blood pressure concerns. His general practitioner, however, did encourage him to increase the dose and experiment. The whole point is moot however, the medicine simply does not work, anymore.
Dennis carries a towel with him, almost every where he goes these days. This towel is just to mop up the drool that is continuously sliding out of his mouth. As I have mentioned before, he is not much fun to watch eat, and most of this is due to the drool.
This is really getting exasperating, for both of us. I want, so much, to understand all that he says to me. I desire to enjoy a meal with him without cleaning his face three or four times. I need to be able to go out to eat with him, without anyone either staring at him, or avoiding looking at him. I hope to have a conversation with him without asking him, three or four times, to repeat himself. I wish that he could be understood by others, so that I am not always interpreting for him. I need him to feel capable, once again, and not always dependent on someone else.
Is this asking too much?
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and way too much drool
Wednesday, September 3, 2008
Closing and Such
Oh, my. Sometimes as life gets easier, it gets more complicated. We are surrounded by all this terrific technology, but it seems, some days, it just gets more difficult.
We closed on our old house today. Everything went well. The were no complications or problems at all. The money, from the sale, was transferred into our account and for about three hours we were reasonably rich. But, alas, reality hits, and we had to pay off the line of credit we opened to purchase our new home. Dennis normally takes care of this stuff, because I don't deal successfully with money issues. That, and I have a hair trigger temper when it comes to phone conversations.
Unfortunately, his speaking was way off today, and when he attempted to take care of business over the phone, they could not comprehend him. Consequently, when I came home, I had to do the phone call.
I would think that transferring money from one account into another should be easy. We do all of our banking with the same bank, and have several accounts. We are, as they say in the biz, preferred customers. But, no. This was not easy or quick or at all efficient, and I did not feel like a preferred customer. Not one tiny, little bit.
The phone call racked up a total of 89 minutes. Yes, that is one hour and 29 minutes. I was transferred over 9 times, answered the same questions each time, and was given 2 different amounts for a payoff. How can this possibly happen?
Maybe it is just too many hierarchies. Each person was only allowed to do so much. I understand that the first person could not do everything, but by the time I was put in touch with the "elite" representative, I did not expect to be transferred "down" once again, just to repeat my account numbers, social security numbers and my secret question and answer, once again.
I only got a bit mad, once. And, that was with the person who finally could help me. For the record, I apologized. It just all seems to be so laborious to do the right thing, these days. Here, we had a loan we wanted to pay off, and no one wanted to take our money. I am not so cynical as to think they wanted to make more money from us by putting me off. I am skeptical enough to believe that many would have hung up and paid a bit more interest to obtain a few cooling off days.
It pains me that Dennis could not take care of this today. He so wanted to be the one to take care of all of this, and spare me that phone call. He knows how irritated I can get and how easily I can blow up. I admit, I did threaten, at one point, to move all of our money and accounts if I was transferred one more time. Guess what? That person did not transfer me again.
Ah, well, the house is sold, the money has been spent, and it is finally over. It has been a long spring and summer. And now it is fall. I believe I am ready to rest.
Until Tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, and only one home
We closed on our old house today. Everything went well. The were no complications or problems at all. The money, from the sale, was transferred into our account and for about three hours we were reasonably rich. But, alas, reality hits, and we had to pay off the line of credit we opened to purchase our new home. Dennis normally takes care of this stuff, because I don't deal successfully with money issues. That, and I have a hair trigger temper when it comes to phone conversations.
Unfortunately, his speaking was way off today, and when he attempted to take care of business over the phone, they could not comprehend him. Consequently, when I came home, I had to do the phone call.
I would think that transferring money from one account into another should be easy. We do all of our banking with the same bank, and have several accounts. We are, as they say in the biz, preferred customers. But, no. This was not easy or quick or at all efficient, and I did not feel like a preferred customer. Not one tiny, little bit.
The phone call racked up a total of 89 minutes. Yes, that is one hour and 29 minutes. I was transferred over 9 times, answered the same questions each time, and was given 2 different amounts for a payoff. How can this possibly happen?
Maybe it is just too many hierarchies. Each person was only allowed to do so much. I understand that the first person could not do everything, but by the time I was put in touch with the "elite" representative, I did not expect to be transferred "down" once again, just to repeat my account numbers, social security numbers and my secret question and answer, once again.
I only got a bit mad, once. And, that was with the person who finally could help me. For the record, I apologized. It just all seems to be so laborious to do the right thing, these days. Here, we had a loan we wanted to pay off, and no one wanted to take our money. I am not so cynical as to think they wanted to make more money from us by putting me off. I am skeptical enough to believe that many would have hung up and paid a bit more interest to obtain a few cooling off days.
It pains me that Dennis could not take care of this today. He so wanted to be the one to take care of all of this, and spare me that phone call. He knows how irritated I can get and how easily I can blow up. I admit, I did threaten, at one point, to move all of our money and accounts if I was transferred one more time. Guess what? That person did not transfer me again.
Ah, well, the house is sold, the money has been spent, and it is finally over. It has been a long spring and summer. And now it is fall. I believe I am ready to rest.
Until Tommorow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy, and only one home
Tuesday, September 2, 2008
A New Time Saver
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
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
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
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