Yesterday was our last scheduled visit to The Mayo Clinic. Dennis was filled with hopefulness, I had rather lower expectations. We spent two hours with Dr Ahlskog, a movement disorder specialist with plaques, awards, certificates, and diplomas lining his wall. He was not only a well respected man by his colleagues, but we liked him, too.
And we finally got what we had been asking for all along. A final diagnosis. Dennis actually does have Multiple System Atrophy. For those of you that seldom read, or have just begun reading, I will offer up my understanding of all of the movement disorders in following blog entries. But, for today, I need to talk about Dennis.
Dennis was hoping for some sort of miracle. A different diagnosis, one that offered him a longer life. One that said there was a cure and a possibility. I understand. I, too, hope for that, but no longer do I expect to hear such news.
On the drive back to Minneapolis, Dennis started his grieving process once again. This time, he skipped denial and went right to anger. "I might as well start smoking cigarettes again." "My goose is cooked." "It's not fair."
Yes, my love it is not fair. I don't know what to say about the cooked goose thing - I never did understand what that meant. But, please, don't do something dumb like smoke cigarettes. I won't ever kiss you again, if you do.
Until later,
Ann and Dennis
Wednesday, June 10, 2009
Monday, June 8, 2009
Looking Back
I put my last day in at school today. Sigh. I am exhausted. I can't believe how much has happened since last year at this time.
Dennis has been in the hospital twice
Dennis has gone from a walker to a wheel chair
We moved into our condo
We went to Paris and London and are planning our trip to Ireland
I lost a best friend due to Dennis' illness
I gained a bunch of friends and buddies due to Dennis' illness
My father died suddenly and unexpectedly
My mother needs more of her children's care than before
My sister married and moved to London
Whew. I get tired just writing this list.
I am in the process of reading a book called The Diving Bell and The Butterfly. It was made into a movie a couple of years back. I have never seen the movie, but I purchased the book for my mom a year or two ago. When we were staying with mom, after dad's death, I found the book and read it one sleepless evening. I am re-reading it now for an online book group. It's inspirational, touching, and reminds me that life could be so much more difficult. And it could.
This has been a difficult year, but also a year filled with love. Some days, love is all we have.
Until later,
Ann and Dennis
Dennis has been in the hospital twice
Dennis has gone from a walker to a wheel chair
We moved into our condo
We went to Paris and London and are planning our trip to Ireland
I lost a best friend due to Dennis' illness
I gained a bunch of friends and buddies due to Dennis' illness
My father died suddenly and unexpectedly
My mother needs more of her children's care than before
My sister married and moved to London
Whew. I get tired just writing this list.
I am in the process of reading a book called The Diving Bell and The Butterfly. It was made into a movie a couple of years back. I have never seen the movie, but I purchased the book for my mom a year or two ago. When we were staying with mom, after dad's death, I found the book and read it one sleepless evening. I am re-reading it now for an online book group. It's inspirational, touching, and reminds me that life could be so much more difficult. And it could.
This has been a difficult year, but also a year filled with love. Some days, love is all we have.
Until later,
Ann and Dennis
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.
Thursday, May 28, 2009
Prairie Dogs
I can't go back to sleep.
It's four am, and Dennis is chasing prairie dogs in his sleep. I don't know why those pesky prairie dogs keep nipping at his ankles, but they do. At least 3 nights a week he is fighting them off, swearing at them and they just keep biting away. It's quite a noisy dream and his legs and arms flail around in stiff and abrupt motions. It's not easy to stay asleep, or fall back to sleep when he is dreaming out loud.
One of his doctor's suggested that he take an extra sleeping pill midway through the night. In theory, it should work. In actuality, this would mean waking him up, propping him up, giving him the pill, unpropping him and readjusting him to a sleeping position. This would be a 30 minute process, and I would be so wide awake by the end, I still wouldn't be able to get back to sleep.
I tried putting my arm around him, but he is wearing his dinner from the night before, and his chest is sticky. I talked to him and let him know that I chased every last one of those critters away, but he must not have believed me, because he just kept flailing and yelping.
Finally, I got out of bed, cleaned up the kitchen and sat down to write this blog. Naturally, now that it almost time for the alarm to go off, he has quieted down. Oh, well, yesterday his PCA wasn't able to come and we slept in until almost 11:00. I can't complain about a lack of sleep.
I would, however, like to figure out why he dreams of prairie dogs. Is it just me, or is this an odd animal to have in a dream?
Until later,
Ann and Dennis
It's four am, and Dennis is chasing prairie dogs in his sleep. I don't know why those pesky prairie dogs keep nipping at his ankles, but they do. At least 3 nights a week he is fighting them off, swearing at them and they just keep biting away. It's quite a noisy dream and his legs and arms flail around in stiff and abrupt motions. It's not easy to stay asleep, or fall back to sleep when he is dreaming out loud.
One of his doctor's suggested that he take an extra sleeping pill midway through the night. In theory, it should work. In actuality, this would mean waking him up, propping him up, giving him the pill, unpropping him and readjusting him to a sleeping position. This would be a 30 minute process, and I would be so wide awake by the end, I still wouldn't be able to get back to sleep.
I tried putting my arm around him, but he is wearing his dinner from the night before, and his chest is sticky. I talked to him and let him know that I chased every last one of those critters away, but he must not have believed me, because he just kept flailing and yelping.
Finally, I got out of bed, cleaned up the kitchen and sat down to write this blog. Naturally, now that it almost time for the alarm to go off, he has quieted down. Oh, well, yesterday his PCA wasn't able to come and we slept in until almost 11:00. I can't complain about a lack of sleep.
I would, however, like to figure out why he dreams of prairie dogs. Is it just me, or is this an odd animal to have in a dream?
Until later,
Ann and Dennis
Monday, May 25, 2009
Another Poop Story
This is another issue of poop problems, so quit reading now if you have no interest or a sensitive constitution. I will not be insulted, I promise.
A while back I mentioned that Dennis had started using Activia, the yogurt enhanced with some fancy term that basically means a gentle diuretic. In plain old English, a poop mover. He ate it for the recommended 14 days, and Voila!, he pooped. We were sold on this stuff.
Unfortunately, a few days after the 14 day challenge, he started up with the diarrhea. By now you all know, that nothing is normal with Dennis. Constipation is not normal and diarrhea is not normal. When he is sitting on the toilet, he somehow manages to get poop all over, inside and out and even on the shower curtain. The floor, of course, needs a good scrubbing each time, too. Then there are those times, when he is not sitting on the toilet, but he is, unbeknownst to himself, still pooping. Right now he is wearing double diapers to prevent massive leakage, but yesterday he still managed to end up with a pair of shorts that we both agreed would best be tossed in the garbage.
One of my favorite times, though, is the poopy butt shower. It seems the scrubbing of the poopy butt, encourages the butt to let loose. I have barely missed being pooped on more than I care to mention, while giving him a butt side up shower.
Like the urination issues of yore, the daily changing of sheets, and the hourly changes of diapers, we are becoming used to dealing with this with humor. And I suppose, love. If these problems are a test of our love and our ability to laugh, then we are both passing with flying colors. But hey, already. Enough testing. We do not plan to fail.
Until later,
Ann and Dennis
A while back I mentioned that Dennis had started using Activia, the yogurt enhanced with some fancy term that basically means a gentle diuretic. In plain old English, a poop mover. He ate it for the recommended 14 days, and Voila!, he pooped. We were sold on this stuff.
Unfortunately, a few days after the 14 day challenge, he started up with the diarrhea. By now you all know, that nothing is normal with Dennis. Constipation is not normal and diarrhea is not normal. When he is sitting on the toilet, he somehow manages to get poop all over, inside and out and even on the shower curtain. The floor, of course, needs a good scrubbing each time, too. Then there are those times, when he is not sitting on the toilet, but he is, unbeknownst to himself, still pooping. Right now he is wearing double diapers to prevent massive leakage, but yesterday he still managed to end up with a pair of shorts that we both agreed would best be tossed in the garbage.
One of my favorite times, though, is the poopy butt shower. It seems the scrubbing of the poopy butt, encourages the butt to let loose. I have barely missed being pooped on more than I care to mention, while giving him a butt side up shower.
Like the urination issues of yore, the daily changing of sheets, and the hourly changes of diapers, we are becoming used to dealing with this with humor. And I suppose, love. If these problems are a test of our love and our ability to laugh, then we are both passing with flying colors. But hey, already. Enough testing. We do not plan to fail.
Until later,
Ann and Dennis
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
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