Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Wednesday, September 29, 2010

Change


"Most people can look back over the years and identify a time and place at which their lives changed significantly. Whether by accident or design, these are the moments when, because of a readiness within us and a collaboration with events occurring around us, we are forced to seriously reappraise ourselves and the conditions under which we live and to make certain choices that will affect the rest of our lives." Frederick Flack

I tend to agree more with Maxine, "Change is O.K. as long as I don't have to do anything differently."

As my strength goes out the window I need to make changes monthly. How I drink my coffee, how I transfer to bed, how I pay for things(I can no longer sign my name so Visa is out), how I hold my head(need headrest)---these are all adaptations to change. Do I like them? Of course not. Do I accept them? Only with a little grumbling. But with time I stop thinking about it and move on. I don't have any choice and I refuse to become melancholy for days. Change is a strange bedfellow. You look forward to it or dread it, you accept it or mumble about it forever. Time is so precious , therefore I choose to make changes with some grace. I'm thankful that I have help from the ALS Clinic and Society. I'm thankful that my friends and family encourage me. I'll just keep the occasional tantrum a secret between my caregiver and me.

Saturday, September 25, 2010

Checking lottery tickets


No, I haven't won but I'm planning on it. Just $500,000 is all I need. I'm not greedy. Perhaps next time. I'll let you all know.
Today is a beautiful day and I'm going to Meinhardts to pick up a few groceries then off to explore some streets I haven't travelled before. Every apartment block, every home, has a story if you look with a little imagination and have some facts about history of the area. What I don't know, I make up. My mind can be quite entertaining. Yes, I know I should "get a life" but I quite like this one.

Friday, September 24, 2010

Antisocial


If you don't want visitors--buy this home.

Saturday, September 18, 2010

Friday, September 17, 2010

A Dream

ALS also known as MND

Thursday, September 16, 2010

Tuesday, September 14, 2010

Losing My Voice


Vocal Cord Paralysis

Definition
The vocal cords are two bands of tissue located in the larynx (voice box) above the trachea (windpipe). The vocal cords open and close like a valve during breathing, swallowing and voicing. Voice is produced when exhaled lung air passes over the closed vocal cords and causes them to vibrate. During swallowing, the vocal cords close to protect the airway.

Vocal cord paralysis is a condition that occurs when one or both of the vocal cords (or vocal folds) do not move properly. The lack of movement may be partial (paresis) or complete (paralysis), and the symptoms can range from mild to life threatening. A person who has a vocal cord paralysis may experience voice and/or swallowing difficulties.


Figure 2A (left):
The vocal fold on the top of the photo is paralyzed. .

Figure 2B (right): Even with extreme effort, the opposite vocal fold cannot meet its partner.
Figure 2A (LEFT): The vocal fold on the right of the photo is paralyzed.
Figure 2B (RIGHT): Even with extreme effort, the opposite vocal fold cannot meet its partner.

I'm showing you this to demonstrate why I struggle to speak now. Whenever I talk it feels like I'm trying to bring my throat walls together. It is very fatiguing. Eventually (4 or 5 mos. is my guess) I won't speak at all. Please still talk to me. I will be an excellent listener--for a change. LOL. By the way--don't feel sorry for me--I've talked my share in life and will still have the internet to speak my mind--if you dare give me your email address!

Slow exposure

This is a photo I took of fireworks. Most people would throw it out but I found the intricate pattern intriguing. If I could paint I would use the picture as a sketch for an abstract. It brims with energy, color and light.

Sunday, September 12, 2010

Saturday, September 11, 2010

I don't 'do' Mondays

Tuesday, September 7, 2010

Girl Who Loved The Wind

Girl Who Loved The Wind is a children's book written in the early 70s. A young girl experiences freedom in the wind, away from her overprotective Father. I never had an overprotective Father, but I do have a disease that controls me physically.
Today I went out for a ride in the late summer wind. Somehow I felt free from my handicaps -- I thought at full speed I might fly. It was chilly but sunny, and a slightly clouded blue sky made me recall watching all those animal shapes float over me as I lay stretched out on the grass. Childhood was blissfully filled with fantasy.
Freedom is not where you find it but rather where and when you feel it. The freedom I felt in the wind today was very much like the wonderful freedom I feel in 'aloneness' that has always lured me away from the mainstream.
Today was a marvellous day.

Friday, September 3, 2010

Thursday, September 2, 2010