It always happens. I had a terrific day yesterday, exhausting and long, but exciting and filled with adventure. Now, today, I am having the downside bounce, struggling with clothing, intimate bodily functions failing me at critical moments, pain in my arms and hands. It's all of a piece, this...
Posted on Friday, April 17, 2015 - 10:13,
Writing this blog has blessed me in ways I could never have imagined when I began. The connections made with other writers around the world, for example. With one exception, I have never met any of these folks in person, but I feel like I know them. They are friends in a very unique sense....
Posted on Thursday, April 2, 2015 - 16:18,
Emotional exhaustion, irritability, insomnia, guilt, resentment, depression, anger, loneliness — certainly a long list of negative feelings — all symptoms attributed to caregiver burnout.
With family caregivers providing nearly 80 percent of non-paid home care services, it’s no...
Posted on Friday, March 27, 2015 - 10:59,
2 … 0 … 1 … 5 … 2015 … 2015 … 2015 … What is that strange looking number? It’s a number, a year, I never thought I would see. On the day of my diagnosis I had no intention of going on the ventilator and thought I would be lucky to see 1997. Of course, all of that changed when I discovered...
Posted on Thursday, March 5, 2015 - 13:32,
I'm quickly getting used to the constancy of having Katherine in my life. She is happily sitting next to me, enjoying some more of the Greek salad we prepared together for our dinner last night. We just got my laundry going. Next we will spend a couple of hours just enjoying each other's company,...
Posted on Wednesday, February 25, 2015 - 11:16,
We have now met the whole hospice team assigned to us. They are awesome. Every single one. God has gifted some amazing individuals with talents that far exceed their job titles. Working with terminally ill patients and their families might sound like a depressing occupation but everyone is upbeat,...
Posted on Wednesday, February 18, 2015 - 11:55,
Have you ever heard of work-arounds? I’ll bet you’ve seen them, and even used them yourself!
A work-around is a temporary solution or adaptation to help solve a problem. Examples are: when you spot red duct tape over a broken tail light or someone puts a safety pin in the...
Posted on Wednesday, February 11, 2015 - 05:00,
A woman has come into my life. I thought that this part of my life was over, that something like this could never happen to me. I thought that no woman would ever want me in my damaged, terminal state. Yet here she is, fully aware of what is happening to my body, what is happening to my life. I am...
Posted on Wednesday, February 4, 2015 - 16:12,
I am up early this morning, at least early for me, in order to take a friend to a doctor's appointment. She slipped on the ice the other day and broke her wrist. The cast makes it almost impossible for her to drive, and certainly dangerous. So I volunteered to be the driver this morning. I have to...
Posted on Wednesday, January 28, 2015 - 05:00,
ALS is weird. For me, at least. Sneaky, too.
I go along thinking, “Okay. We’re doing alright. Holding steady.” And suddenly what was already difficult gets even harder.
Take talking, for example. I’ve had speech difficulties for a while now. Those who are with me a lot usually...
Posted on Wednesday, January 21, 2015 - 13:43,
Editor's note: The word disease is written dis ease by Bruce Kramer in all of his blogs, which coincides with the title of his blog, Dis Ease Diary.
Bruce Kramer, Ph.D.
In the four years since my diagnosis into dis ease, I have sought to make the best of a bad situation. In writing about...
Posted on Friday, January 16, 2015 - 14:39,
It is the first day of a new year, or at least according to our Julian calendar. In my mind, this is just another one of those artificial marker posts we, as human beings, seem to need in our life. Watching the calendar, especially in an agrarian society, is a significant and important task. This...
Posted on Wednesday, January 7, 2015 - 09:28,
I saw an ad on Facebook for the Rich Dad-Poor Dad seminar. That guy in the advertisement certainly looks nothing on earth like my Dad looked. The man in the ad has a plastered on smile with perfect teeth, trending clothing, not a wrinkle of care on his face. He is clearly the product of a well...
Posted on Tuesday, December 23, 2014 - 05:00,
The View From My Window Is Still Lovely.
However, I must apologize for not communicating. These days … My correspondence by email Has been short, I have neglected my blog, I have stopped seeing visitors. This has that not been by choice. I have lost the ability to...
Posted on Thursday, December 18, 2014 - 12:57,
At our MDA ALS Support Group, our therapist David encourages each of us PALS to set specific goals for the coming weeks. Sometimes I have a hard time with this. I mean, really, there isn’t much I can do, right?
But something clicked for me at this most recent meeting. We...
Posted on Wednesday, December 10, 2014 - 05:00,
If someone had told me there would come a time in my life when food would mean nothing to me, I would have told them they were absolutely nuts! Food meant the world to me growing up. I had a slow start in life after my very precarious birth. That resulted in a lot of frustration and I found my...
Posted on Tuesday, November 25, 2014 - 05:00,
It was a warm, humid, no wind October afternoon in Honolulu, Hawaii.
"Do you want the window open or the air conditioner on?" she asked.
"Yes," I answered.
"You want the air conditioner?"
"Would you like the window opened?"
"OK then, let's turn on the fan ... "
Posted on Friday, November 21, 2014 - 11:49,
Before I was formally diagnosed with ALS, I remember thinking that it couldn’t be that. The cases I’d heard about all progressed so quickly. Whatever I had was moving so slowly.
Of course, as we soon learned, ALS can move very fast. Or very slowly. And everything in between....
Posted on Friday, November 14, 2014 - 10:36,
"The time has come," the Walrus said, To talk of many things:" "Of shoes — and ships — and sealing-wax — Of cabbages — and kings... "— Lewis Carroll
I think of these lines from Lewis Carroll's "The Walrus and the Carpenter" often, whenever I think about my present and my...
Posted on Thursday, October 30, 2014 - 16:44,
I can’t say my prayer life has suffered any at the hands of ALS. If anything, my spiritual muscles have bulked up exponentially as my physical muscles have fallen asleep. Nothing has the potential to bring you closer to God like being diagnosed with a terminal disease. And I’m talking close like...
Posted on Friday, October 24, 2014 - 13:57,
She wiped the morning drool from the corners of my mouth.
"Thank you," I said.
She helped me sit up and get comfortable in bed.
She turned on the television and served fresh coffee with a straw.
Afterward, she brushed my teeth, shaved and washed my face...
Posted on Tuesday, October 14, 2014 - 16:00,
Some of my favorite gifts come in the form of people. This past week, I had the joy of visiting with several that I don’t see often.
My regular Thursday afternoon pattysitter™ has been out of town so others have been filling in for her. This last week my brother’s wife took the...
Posted on Monday, October 6, 2014 - 09:31,
Our son, Daniel, graduated from high school on May 18. He turned 19 on June 12. I turned 56 on August 6. Daniel left for college at the University of Tennessee in Knoxville on August 15. I “celebrated” the 20th anniversary of my ALS diagnosis on September 7. And my husband, Curry, and I will truly...
Posted on Monday, September 22, 2014 - 14:31,
It’s been a while. I just have to write when the need comes and I feel the need right now. I ask you please bear with me for any mistakes as my thinking can be a little foggy right now. It’s likely I’ll make a mistake, but no harm, right? If you can’t figure it out just get with me.
Posted on Friday, September 12, 2014 - 16:00,
The ALS Ice Bucket Challenge.
Unless you live in a remote area with no Internet access, no cellphone service and no TV (and how are you reading this if that is the case??!), you have seen dozens, if not hundreds, of people get soaked over the past couple of weeks. All this is...
Posted on Friday, September 5, 2014 - 15:54,