This blog is not easy for me. It's a tough thing, having something to write each morning, even tougher getting it from brain to keyboard. You would think that someone with so much to talk about would have no trouble coming up with a subject each day. The problem is that the subject is pretty...
Posted on Thursday, January 7, 2016 - 14:08,
It's Christmas baking day today. Actually, the preparations started a few days ago, with a shopping trip, of course. Then, last night, Katherine helped me make a batch of Shortbread Cookies using my grandmother's recipe. We also made a batch of pastry dough for the mince tarts and butter...
Posted on Wednesday, December 23, 2015 - 07:00,
I have been thinking about you a lot lately. I miss you. You died a few months before my 20th birthday. Two-thirds of my life here on earth has been without you. So many of the people I love never knew you.
Actually, though, I only knew the last 20 years of your...
Posted on Monday, December 21, 2015 - 07:00,
The other day a friend complimented me on my positive attitude and asked how I managed to "find the funny" in everyday things.
My reply? “I don’t go looking for it — it finds me!
To help you understand, I’ll share a couple of stories from...
Posted on Tuesday, December 15, 2015 - 07:00,
My ALS progression may be slow and the changes I notice may be quite small at this time, but they’re there. Subtle or not, I am aware of the changes.
A small change that makes me sad is losing what remained of my speech. I keep trying. But it’s really gone. I miss...
Posted on Friday, December 4, 2015 - 02:27,
I’ve always enjoyed watching how things are done. From cooking to construction, I find the creative process fascinating. It’s fun to watch “behind the scenes” features about TV shows and movies, too.
If you’re not a blogger, you may find this...
Posted on Tuesday, November 24, 2015 - 16:12,
Editor's note: Erin Brady Worsham originally wrote this piece in 2003, but she explains that it fits in nicely with National Family Caregivers Month (November). To learn more about Worsham's 21-year journey with ALS, read her blog post Coming of Age (October 5, 2015).
Posted on Friday, November 6, 2015 - 09:00,
On September 7, 2015, my ALS diagnosis celebrated its 21st birthday. It was a very paltry affair with no refreshments, presents or guests. Reaching one’s 21st birthday is usually a major milestone and big celebration, but ALS diagnosis isn’t your usual celebrant. I’m sure it was...
Posted on Monday, October 5, 2015 - 10:15,
August heat has been brutal, as usual, but I am so thankful for air conditioning! Whew! Without it, I would be a cranky mess. I’m enough of a mess as it is!
Despite the heat, we do get out now and then.
Last Saturday’s ALS support group meeting at MDA found me, once...
Posted on Wednesday, September 9, 2015 - 10:27,
My new book titled Align, Lengthen & Strengthen Your Resilience While Living with ALS is now published and available as a FREE download from my blog site.
If you or someone you know has been diagnosed with ALS, or are facing any other kind of life-threatening illness — I...
Posted on Wednesday, August 5, 2015 - 10:09,
We try to make the most of the little things. When it became pretty clear I had developed an ingrown toenail (Eewwwww!) Alan scheduled a visit to the podiatrist I saw a couple years ago for the same problem. I really like this doctor because he’s so easy-going and funny. While we waited for the...
Posted on Wednesday, July 29, 2015 - 14:22,
See the article on mda.org: http://www.mda.org/media/press-releases/mda-unites-als-community-als-ice...
Posted on Wednesday, July 22, 2015 - 14:48,
Things are a bit difficult this morning. Katherine and I had one of our very rare differences of opinion last night. As with most of these things, it was a simple event that clouded a much more serious issue.
She wanted to put skin creme and powder on my feet and other...
Posted on Thursday, July 9, 2015 - 15:20,
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,