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
Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts
Wednesday, September 24, 2008
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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