It's been over a week since I last wrote. I apologize, but it has been rather busy.
Dennis was in the hospital until Monday evening. He had another swallow video, and this time they are recommending thickening all liquids to honey consistency. This should cut down on his Coke intake, at the very least. They also took him off of his night time sedatives, because they seem to be causing his throat to relax too much.
The first night home was horrendous. "ur ee." "i illo uffica e." "ake eh eel air off eh ed!!" (Turn me, my pillow is suffocating me and take the wheel chair off of the bed). These hallucinations went on most of the night, and I crawled back to work the next morning.
He has improved since then. Well, he did ask me if it was time for him to go to hospice care, and other such nonsense. After reminding him that he promised he would live for at least another year, he calmed down a bit.
Then...
We went to the Mayo Clinic for a yearly follow-up appointment. After all the poking and prodding, the questioning and the tests, he was declared to be still in stage 4 of his disease. Now this is good news. Although a few of his symptoms have become more problematic lately, he hasn't deteriorated to the point of knocking on deaths door. Or, in MSA speak, another autonomic system has not been affected since last year.
This is good news to take us into the holiday season. Jane and Ralph arrived yesterday from London and Dennis and I leave for wine country in California in one week. It should be a good two week vacation for me, with my now cheered up love and family around, as well as a spa retreat with great California wine!
Happy holidays, one and all.
Until later,
Ann and Dennis
Showing posts with label Mayo. Show all posts
Showing posts with label Mayo. Show all posts
Saturday, December 19, 2009
Wednesday, June 10, 2009
The MSA Diagnosis is Official
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
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
Sunday, February 22, 2009
Odds and Ends
Dennis finally heard from Mayo regarding his last heart test. He failed, again. Now we know for sure that he does not have Shy-Drager.
Dennis' insurance is more messed up than we thought. Nothing is being covered right now, and one customer representative told me that he only has coverage from an HMO in Wisconsin. Huh? Another mess to sort out.
Dr. Kimpinski, at the Mayo, is trying to find help for Dennis to see a movement disorder specialist in Rochester. Perhaps if this insurance issue gets straightened out, he might still get the help he deserves.
Dennis showed me why he believes he has about 2 or 3 years to live. On all of the Parkinson's scale, it appears he is moving into the final stage of any movement disorder disease. Well, I already knew that, but haven't wanted to admit it to myself.
Justina, Dennis' Thursday and Friday PCA, is working out fine. Dennis enjoys her, she works hard and is nice to Dennis. For the first time in a while, I have been feeling better about going to work daily.
We were lucky enough to receive a few inches of snow just in time for my winter carnival event at school. Whew....I was getting a bit worried.
Have a great week ahead.
Until later,
Ann and Dennis
Dennis' insurance is more messed up than we thought. Nothing is being covered right now, and one customer representative told me that he only has coverage from an HMO in Wisconsin. Huh? Another mess to sort out.
Dr. Kimpinski, at the Mayo, is trying to find help for Dennis to see a movement disorder specialist in Rochester. Perhaps if this insurance issue gets straightened out, he might still get the help he deserves.
Dennis showed me why he believes he has about 2 or 3 years to live. On all of the Parkinson's scale, it appears he is moving into the final stage of any movement disorder disease. Well, I already knew that, but haven't wanted to admit it to myself.
Justina, Dennis' Thursday and Friday PCA, is working out fine. Dennis enjoys her, she works hard and is nice to Dennis. For the first time in a while, I have been feeling better about going to work daily.
We were lucky enough to receive a few inches of snow just in time for my winter carnival event at school. Whew....I was getting a bit worried.
Have a great week ahead.
Until later,
Ann and Dennis
Wednesday, February 4, 2009
All This, and No Results, Yet
I am glad that this Mayo visit is finished. It ended up being two very long days and in the end, we never heard the results of the tests. I know we will, eventually, but it is rather a let down spend two days coming and going from the hospital and end up knowing nothing new.
The tests themselves weren't much of anything, from what Dennis told me. Both days he would start out with a cursory check by the nurse, and then he would drink some iodine. The first day this burned his throat, but he was a trooper and took it again the second day. Then he was with the technician being stuck with needles, forcing dye through his veins and towards his heart. He was so comfortable, he fell asleep the first day. We would have between one and four hours off, when he would return and have pictures taken.
All in all it was dull and long. In fact, the most exciting part of the whole adventure was the poop fest. Now aren't you envying us our daily lives?
The tests themselves weren't much of anything, from what Dennis told me. Both days he would start out with a cursory check by the nurse, and then he would drink some iodine. The first day this burned his throat, but he was a trooper and took it again the second day. Then he was with the technician being stuck with needles, forcing dye through his veins and towards his heart. He was so comfortable, he fell asleep the first day. We would have between one and four hours off, when he would return and have pictures taken.
All in all it was dull and long. In fact, the most exciting part of the whole adventure was the poop fest. Now aren't you envying us our daily lives?
Monday, February 2, 2009
Day One of Research Test Two
It was a long day - with driving, doctor visits and test, pooping and cleaning up. We had settled into our hotel room and decided to find a place to have a dessert before retiring for the evening. We were both exhausted, but we weren't quite ready to watch TV in bed. There just isn't much else to do in a cheap hotel room, and the book I brought was not calling to me.
We cleaned up, to the best of our abilities, and headed out through the crazy subway and sky way system of Rochester. Rochester is all about the business of hospitals, clinics, research, hotels and restaurants. The subway, and sky way walkways seem to be add-ons, to ensure shopping and eating while making your way around the tiny downtown area in the cold of Minnesota winters. They aren't efficient or direct, but then I am spoiled by the great sky-way system of downtown Minneapolis.
We were off. We weren't venturing too far, just to a hotel a few blocks away. We turned down the wrong hallway, when Dennis said, "Take me back to the room."
We had crabbed at each other all day. He was demanding too much, and I was bossing him around too much. It took me 7 minutes to eat my lunch time burger, it took him 40 minutes to eat half of his. He needed to be cleaned up a few times because of pooping issues, and I didn't feel like cleaning up crap all day. The list of complaints we had were trivial, and really just frustrations that life wasn't feeling quite fair at this particular place and time.
Today was day one of the test. Tomorrow we will find out, we hope, that he does not really have MSA or Shy-Drager. I suppose this was weighing on us all day, too.
We cleaned up, to the best of our abilities, and headed out through the crazy subway and sky way system of Rochester. Rochester is all about the business of hospitals, clinics, research, hotels and restaurants. The subway, and sky way walkways seem to be add-ons, to ensure shopping and eating while making your way around the tiny downtown area in the cold of Minnesota winters. They aren't efficient or direct, but then I am spoiled by the great sky-way system of downtown Minneapolis.
We were off. We weren't venturing too far, just to a hotel a few blocks away. We turned down the wrong hallway, when Dennis said, "Take me back to the room."
We had crabbed at each other all day. He was demanding too much, and I was bossing him around too much. It took me 7 minutes to eat my lunch time burger, it took him 40 minutes to eat half of his. He needed to be cleaned up a few times because of pooping issues, and I didn't feel like cleaning up crap all day. The list of complaints we had were trivial, and really just frustrations that life wasn't feeling quite fair at this particular place and time.
Today was day one of the test. Tomorrow we will find out, we hope, that he does not really have MSA or Shy-Drager. I suppose this was weighing on us all day, too.
Saturday, January 31, 2009
The Good Fight
We have been on a few missions this week, trying to fight the good fight. We didn't make much headway, however.
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
The insurance story you already know. We visited his doctor at the Struther's clinic and she agreed to refer us to the Mayo clinic, but the insurance company turned us down one more time. We aren't finished, but we do need to find another tactic before proceeding.
The other issue is about our condo. Our windows are iced up and dripping with water. The builders say it is too much humidity - well, duh. They say we our causing too much humidity by taking a shower a day and cooking occasionally. The humidity problem has nothing to do with the construction of the condo.
I am taking the weekend to not think about any battles of any type. I have absolutely no interest in trying to figure out the next step at this moment. When I have re-energized , I will take up the fight once again. Right now, my brain needs a rest.
Until later,
Dennis and Ann
Thursday, October 9, 2008
Mayo, Day Two
This morning, we dropped off Dennis' 24 hour collection of urine for a sodium count. No matter what you put urine in, unless you flush it down the toilet, it still smells. I was very happy to leave the jugs at the front desk, and take Dennis to his next test - the sweat box.
For the sweat box, a person is stripped naked, and then covered with powder, from head to toe. You are then placed in a large plastic box, and the heat is turned up. As you begin to sweat, the powder turns from white to purple. A typical MSA/SDS patient will sweat only in patches, and large areas of the body show no signs of sweat at all. They will be spotted with purple stains. Dennis was a mass sweat producer and came out of the test completely purple. He failed this test, also.
The nuerologists are fairly certain that Dennis does NOT have an autonomic disorder, or MSA. He still is diagnosed as having stage 4 Parkinson's, on a scale of 1 to 5. These doctors are sure there is something else going on, as is his local doctor.
The next step is yet another test for another study. This one will rule out MSA completely, or confuse the situation even further. He also will receive a referral to a movement specialist at the Mayo, hopefully providing further insight to the progression of Dennis' situation.
We both left today feeling a bit lighter. The death shroud of MSA has been lifted.
Today I don't feel like asking any more questions. I simply feel like sitting here, enjoying the good news.
Until Tomorrow,
Ann and Dennis
Living without Shy-Drager or Multiple System Atrophy
For the sweat box, a person is stripped naked, and then covered with powder, from head to toe. You are then placed in a large plastic box, and the heat is turned up. As you begin to sweat, the powder turns from white to purple. A typical MSA/SDS patient will sweat only in patches, and large areas of the body show no signs of sweat at all. They will be spotted with purple stains. Dennis was a mass sweat producer and came out of the test completely purple. He failed this test, also.
The nuerologists are fairly certain that Dennis does NOT have an autonomic disorder, or MSA. He still is diagnosed as having stage 4 Parkinson's, on a scale of 1 to 5. These doctors are sure there is something else going on, as is his local doctor.
The next step is yet another test for another study. This one will rule out MSA completely, or confuse the situation even further. He also will receive a referral to a movement specialist at the Mayo, hopefully providing further insight to the progression of Dennis' situation.
We both left today feeling a bit lighter. The death shroud of MSA has been lifted.
Today I don't feel like asking any more questions. I simply feel like sitting here, enjoying the good news.
Until Tomorrow,
Ann and Dennis
Living without Shy-Drager or Multiple System Atrophy
Tuesday, October 7, 2008
His Day at the Mayo Has Arrived
We leave, tonight, after work, for Rochester and the Mayo Clinic. I checked out the review for the hotel we are booked into, and they are B-A-D! Yes, I know, we are there for the study, not a vacation. However, as long as we are not at home, isn't it normal to expect great things?
We are both a bit anxious. I love that word, anxious. It suggests both good sensations and negative emotions. That is where we are right now. I am not sure how I feel about the consequences of participating in this study. I know that any information they collect will benefit someone, sometime, somewhere. And that is fantastic. What I don't know is how much it will help Dennis. And that is what I sincerely care about right now.
I anticipate, at the very least, some good advice about how to live a good existence for as long as possible. I would love to find out about a remedy, and I will hold on to that, but it is not in my expectations.
I believe Dennis hopes to know more about his life expectancy and his quality of life. I imagine he would also like the best advice about how to handle his symptoms. And I am positive that he would as well like to hear about a cure.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Hope
We are both a bit anxious. I love that word, anxious. It suggests both good sensations and negative emotions. That is where we are right now. I am not sure how I feel about the consequences of participating in this study. I know that any information they collect will benefit someone, sometime, somewhere. And that is fantastic. What I don't know is how much it will help Dennis. And that is what I sincerely care about right now.
I anticipate, at the very least, some good advice about how to live a good existence for as long as possible. I would love to find out about a remedy, and I will hold on to that, but it is not in my expectations.
I believe Dennis hopes to know more about his life expectancy and his quality of life. I imagine he would also like the best advice about how to handle his symptoms. And I am positive that he would as well like to hear about a cure.
Until Tomorrow,
Ann and Dennis
Living with Shy-Drager, Multiple System Atrophy and Hope
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.
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
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