So, sometimes I am NOT okay.
And these down times often coincide with Tobii difficulties.
Or communication problems in general.
And lack of energy plays a part.
Despite sleeping well at night (with help from meds) I sometimes feel so very tired.
ALS? Depression? Both?...
Posted on Friday, June 26, 2015 - 04:41,
I noticed early this morning just before sunrise, when I often have the deepest and darkest thoughts, that my priorities of day-to-day living have changed.
Eight years ago, just after ALS entered my life, I focused on doing as much as possible … work, play, family. I was in a...
Posted on Monday, June 8, 2015 - 13:51,
A few weeks ago the editor of the MDA/ALS Online Magazine asked me if I would be willing to write a blog entry that would tie in with ALS Awareness Month in the USA, the month of May. I said yes, and then was asked to answer this question.
Complete this sentence: If I had...
Posted on Thursday, May 28, 2015 - 05:00,
Now and then, when I’m in a fanciful mood, I like to think about what I would do if God suddenly gave me the cure. And I’m talking the “Get up and walk, breathe and eat” cure, which would be a piece o’ cake for God. What would I do first? That’s easy! I would hug and kiss my husband and son. Then...
Posted on Tuesday, May 26, 2015 - 05:00,
Hooray, hooray! It's the first of May. Outside screwing starts today!
I learned that rude bit of doggerel from my favourite aunt, many years ago when both of us were much younger. While the verse may be a bit naughty, the sentiment is on the mark. For most of us in Canada,...
Posted on Friday, May 22, 2015 - 05:00,
In June, I will turn 66 and still have so much to learn. My latest lesson? I must learn the art of letting go! This is hard. And for a person with ALS, letting go means so many different things.
Joan Sucher and her husband
For most of my life, I believed if I took care of my body, my body...
Posted on Tuesday, May 19, 2015 - 05:00,
Let me share with you why there is hope in front of me. After being diagnosed with ALS in November 2012, yes, I do believe there is hope.
Hope although the day may soon come when I can no longer use my legs.
Hope although I may become paralyzed and totally dependent on...
Posted on Wednesday, May 13, 2015 - 05:00,
A while back, I was asked by the Muscular Dystrophy Association if I would be interested in participating in their campaign for ALS Awareness Month (May.) I was honored to be asked, and somewhat overwhelmed by all the attention. After all, it was just a few months ago that I was interviewed via...
Posted on Monday, May 4, 2015 - 04:04,
Throughout 2014, everyone from celebrities to school children to MDA’s own CEO could be seen dumping ice water over their heads to raise awareness and dollars to fight ALS. It was a phenomenon that shined an urgently-needed spotlight on a disease that steals everyday freedoms and abilities like...
Posted on Thursday, April 30, 2015 - 11:33,
My neurologist has me scheduled for a blood test at three month intervals. Over the past four years, that computes to a total of 16 visits that I've made to our local lab collection site — with the last three visits being rather pleasant experiences. How so?
Because, the last...
Posted on Friday, April 24, 2015 - 10:51,
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,