A journal of living with Multiple System Atrophy. How we, a 58 year old woman and a 62 year old man, laugh, cry and love our way through Dennis' latest symptoms and newest diagnosis of MSA.
Saturday, May 2, 2009
And now.........
Those of you that have spent time with Dennis, know about his passion for Coke, pies of any flavor and ice cream. You will not be surprised at this diagnosis. While I was not caught completely off guard, I still was not prepared.
I must admit being tired of learning about medical conditions and all of the related issues that accompany any illness. I feel like we are still trying to learn about how to deal with his swallowing problems. And now a new diet issue to incorporate into our lives.
We are taking the day off, today. We slept in, took naps, ordered pizza and watched movies. Tomorrow we will have the energy, once again, to deal with the changes life brings.
Until later,
Ann and Dennis
Monday, April 20, 2009
New Changes
Today we went to the urologist. Dennis has decided that he wants a different catheter; an upper pelvic cath. Instead of going through the penis to the bladder, this one goes directly to the bladder from below the belly button. It sounds strange, but not much stranger than anything else we have encountered over the past few years.
It was only a couple of years ago that Dennis began to collect canes. Just when his collection started getting interesting, more changes came along. It was diapers, layered, to prevent urine leaks. Next it was a walker, then a catheter, and now a wheel chair full time. He tucks his chin to drink, and mushes and chops his food to a "mechanical soft."
Ah, you have heard all of this before. It's just one more change, just one new and different experience. But we aren't living in his body, are we?
I am so sorry, Dennis, that your body has decided to fail you. Just know that you are still loved, and I am lucky to have you in my life.
Sunday, March 1, 2009
Stablilizing
Well, life does happen, and illnesses do stabilize. I have been sick, and Dennis is stable. I have not needed to write as often, to release my angst, and Dennis' life is a bit easier, in some ways.
The falls for Dennis are, for the most part, an event of the past. He has learned how to walk with aides, people, walkers or chairs, and avoid dangerous situations. It's part acceptance of the reality of his disease and party fear of what the next fall could mean.
His blood pressure has stabilized, also causing fewer falls. This is because he takes fewer medications and he is more aware of when he should and shouldn't move. Sometimes a guy just shouldn't stand up.
The catheter has taken care of the need for daily bedding change. My days have stopped centering around a bed stripping, washing and redoing.
The Courage Center has been wonderful for Dennis. He is able to work out on disability friendly weight machines and his muscles are becoming stronger once again. He enjoys the time there, and feels able once again.
A year can bring about so much change, good and bad. For the most part the last few months have been great. We both needed this - a bit of stability and time for acceptance.
Until later,
Ann and Dennis
Sunday, July 27, 2008
Calm
Dennis seems to be in a steady place for the moment. The symptoms he has, have not worsened and there haven't been any new symptoms for some time. Right now, we seem to know what to expect and how to handle the problems when they do occur. We know when to slow down, when to walk and when to rest.
This is good for so many reasons. First, and foremost, it allows us both believe that he could live much longer than we expect much of the time. It also means surprises are not coming our way on a daily basis, and we are free to live in a somewhat calmer manner. It also means no trips to emergency, or the hospital and no new medications to try and figure out.
The calm before the storm? This day I choose to believe that we are in a eternal calm and that life is good and kind once again.