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,
Today, a Facebook friend, someone I have physically never met, posted a video of her taking the ALS Ice Bucket Challenge. She dedicated the cold plunge to me and her mother, who had struggled with the disease. Watching the video brought a smile to my face and a surge to my heart. I felt the ice...
Posted on Thursday, August 21, 2014 - 10:49,
I don't feel like writing today; I knew this would happen one day, that eventually the effort of writing something would be more than I was able to make. I am going to push myself, make myself write, simply because I know if I stop once, I will stop again and again. So even though I don't feel like...
Posted on Friday, August 8, 2014 - 09:49,
My family has been vacationing on Walloon Lake in Michigan since I was a little girl. I saw no reason to change the tradition when I was diagnosed with ALS in 1994. I wanted our son Daniel to grow up with the same sense of excited anticipation my siblings and I had felt as vacation drew near....
Posted on Wednesday, July 30, 2014 - 12:07,
I’ve been having a very difficult time getting a post out. I’ve also found it difficult to reply to comments. It’s been very frustrating because it’s something I have found a lot of comfort in as well as strength and motivation. Looking at the big picture, I guess it’s not so bad. I began this with...
Posted on Friday, July 25, 2014 - 10:03,
My son was slouched in the chair next to my bed.
My wife was on the floor, her head bowed, hair covering her face.
It was about 10 p.m. We were all exhausted. I had finally stopped gagging, spitting and choking. My breathing was starting to return to normal. I had gotten home...
Posted on Thursday, July 17, 2014 - 03:31,
I think it was four or five years ago that my husband, Curry, brought home a little vine in a pot for the garden. It had this beautifully delicate name, silver lace vine. We needed something to replace our purple clematis, which, sadly, had not returned that year to climb on our Martin...
Posted on Tuesday, July 8, 2014 - 11:16,
Been cranky lately. Slightly discouraged. Yeah, that’s right. Me. “Positive attitude” Patty.
Fair warning: Venting in progress. Proceed at own risk.
Here’s the deal. Talking is becoming more and more difficult. Communication after early morning is a real challenge. The thing is...
Posted on Thursday, July 3, 2014 - 10:25,
Today, I feel great except for a little soreness from using my upper muscles more than usual. I am not complaining. This is an unusual thing about having more strength from my surgery. It’s there, but when I use it too much, which isn’t hard to do, I’m very sore. I can live with it though, trust me...
Posted on Friday, June 27, 2014 - 14:07,
It's a slow start this morning, an hour awake, a coffee consumed, yet I am barely functional. Mornings come early on the road, traveling, with things to do and places to go. I had once lived a life like this, once been consumed with managing schedules, catching flights, making meetings. This now...
Posted on Wednesday, June 18, 2014 - 03:35,
We are birders in our house. I don't mean to brag, but I am a very good birdwatcher, for the simple reason that I don't move. The birds don't quite know what to make of me. I once had a Carolina wren land two feet from me and look into my eyes. Believe me, you haven't lived until a Carolina wren...
Posted on Wednesday, June 11, 2014 - 08:57,
Early in the morning, my speech isn’t too garbled. Dragon [Dragon NaturallySpeaking] does pretty well understanding me. So I am dictating this paragraph via Dragon. Later this morning I plan to continue writing using my eye-gaze device, Tobii.
As the day progresses, it becomes...
Posted on Friday, June 6, 2014 - 13:35,
Most people snap their fingers without thought and don’t lose the ability. If the ability is lost due to a disease like ALS, it doesn’t return. I lost that ability because of weakened muscles in my right hand. Hey ALS: I can do it again — oh snap! I could still snap my left side, but it was...
Posted on Wednesday, May 28, 2014 - 05:00,
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.
I was privileged to offer the following last Sunday.
Claire and Matt sit in a small office in the neurological wing at...
Posted on Wednesday, May 21, 2014 - 05:00,