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

Thursday, August 28, 2008

Granville Market



This is a picture of my good friend Barb and me at the market one sunny day. I love the architecture of the Burrard Street bridge in the background. The other picture was my debut as a photographer with my new camera. Watching the boats come and go at the marina is always entertaining.
All is fairly stable here. I've progressed to velcro shoes and pull-on clothes but it's a small matter considering the challenges ahead. My friends and family help me laugh my way through every change--and boy do we have some good laughs!


Monday, August 25, 2008

Watch me!





In my wheel chair, I went up to Granville St., bought a latte at Starbucks, moved a chair so I could roll up to a table, used the washroom without anyone holding the door, went to Chapters and bought 3 children's books(knocked over a small display...OOPS!), came home, called the caretaker to open the door, got my mail and came back up to my apartment-- ALL BY MYSELF. "I'm a big girl now." LOL.
Please watch the video posted on the right titled "Watch me!"


Friday, August 22, 2008

My new bed


Well it's not exactly what I dreamed about when decorating my apartment but it will be a very welcome addition. It's on order from Quebec and should arrive in 3- 4 weeks. It will be a great improvement over the free one I have from the ALS Clinic. My back will thank me. I ordered some new bedding from Linen n Things today--gotta make it look pretty. LOL.
My auto door opener can't be installed for 2 weeks due to problems getting a good electrician-- so I must wait once again. I'm a Queen in waiting. Contractors in Vancouver are so busy that I might have to order my bathroom renos now for next summer!
Tomorrow, I hope to get out during sunny skies and sip a latte in my Jazzy wheelchair and maybe cruise around Chapters. A little birdie told me that the rain may return on Monday so if I don't get out now I'll come down with a bad case of cabin fever.

Wednesday, August 20, 2008

My Comic Life

Tuesday, August 19, 2008

A day to be celebrated!


I can't believe it!! My automatic door opener for the front of the building has been approved. Yahoo!! This is a wonderful freedom for me. No more sitting in my wheelchair waiting for someone to hold the door open to let me out or let me in. This is a win for handicapped people everywhere in Vancouver. A big thank you to my brother Ken who helped with my request from the beginning and stayed with it for 5 long months until approval. Also thanks to Eva Cham, the OT from the ALS Clinic who sent a terrific letter to council before the proposal was presented at the annual general meeting--and thanks to many others involved who stepped up and helped me fight for my rights as a person with a disability. Thank you to all of you who knew of my plight and cheered me on. It is a day to be celebrated.

Sunday, August 17, 2008

My pal in Scotland







This is about my friend and ALS pal Libby from Holywood Village, Scotland, where she lives with her husband Sean and her two handsome sons, Sam and Dan. Their village is just a few miles north of Dumfries. Libby has been a wonderful support for me both as a person with ALS and as a friend willing to share the ups and downs of this journey. The picture of her speeding down the roadway in her power chair always makes me laugh as we both would like to run away some times--not from our loved ones, but from ALS. Thank you Libby for your incredible display of strength, your humour, and your ongoing encouragement.

Saturday, August 16, 2008

Sunrise


I was up early this morning and never cease to be inspired by the sunrise. This photo was taken from my window and the song that came to mind was "Morning Has Broken" sung by Cat Stevens. I've posted a link under Videos. Enjoy.

Thursday, August 14, 2008

My Happy Dance


I'm so happy!! My breathing test results were better than 4 months ago. From 80% to 93%. I'll live to see another day--and many more. Check the video on the right--Today's Feelings. Yahoo!

Tuesday, August 12, 2008

I've been practising


This is me and my buddy ''Cuisses de Grenouille'' out for a morning race down Granville Street. I'm the pretty one. We plan on entering the 2009 Special Summer Olympics in Leicester, England. You can drop off sponsor money at my pad any day between 10a.m. and 10p.m. Please bring cash as Banks don't take frogs too seriously.

After feasting on the leftovers from my sister's 65th Bday party I'm prepared to have Cheerios for dinner tonight. Jennifer(my niece) was kind enough to package up some food and send it in with Ken(my brother). It was a nice change from Lean Cuisine or expensive restaurants.
My next project is to try out some mattresses(one of my tougher assignments). If you never hear from me again you'll know I got a permanent job snoozing for the mattress company.
The council had their final meeting re my auto door opener installation for the front of my building. Keep your fingers crossed. If they don't approve it I've already decided to go to Human Rights and to court. I must win for other disabled persons as well as myself. Let's hope I don't have to go that far but if I do, I want all of you with your banners and placards outside the courthouse when the trial is on. Please dress flamboyantly and come in wheelchairs. I'll keep you updated.
On Thursday I go for another breathing test at VGH. I'm hoping that my score hasn't decreased below 80%. If it has, they may suggest BiPap which is similar to the mask worn for sleep apnea(CPap). BiPap is used for ALS patients to help them breath in and out(muscles are weak) while CPap keeps a continuous flow of air to prevent the sleep apnea person from waking up short of breath. This is more than you needed or wanted to know I'm sure. I'm not looking forward to an addition to my medical assist devices, however, I will do my best to deal with whatever is suggested. I'll just complain to my friends!
Now I must go and do some serious work. I have a book to read.
Cheerio.

Saturday, August 9, 2008

Friday, August 8, 2008

2 years ago


Two years ago Anne and I sat on the bench at Granville Island after 'lunching' on the hotel patio. We had our pens and note pads at ready just in case we were overcome with a creative writing surge. Life seemed carefree. I had no idea I would be diagnosed with cancer, then ALS, and be in a wheelchair in 24 months. My message is: Smell those roses, hug your loved ones, don't put off your fun "to do" list--because you just never know.

Thursday, August 7, 2008


Every now and then(with their permission) I will post a pen pal from the ALS forum. This is Sarah Ezekiel from London. Sitting in her sun filled garden she is using a chin switch and a program called EZ Keys. As Sarah says,"Who needs arms?" She is a great inspiration to many(me included) and an active crusader for MND/ ALS in the UK. Sarah has 2 beautiful children, Aviva 11 and Eric 7. Thank you Sarah, for sharing.

Monday, August 4, 2008


It's my sister's 65th birthday tomorrow. She's the pretty one on the left. It's hard to believe we're as old as that picture. There must be some mistake. Thank heavens we're young at heart. Happy Birthday Sis. Here's to many more.

Friday, August 1, 2008

Stuck in the Muck


Well it was bound to happen. Too much wine with lunch and too much talking coming home with friends. Thud! Off the side walk went my wheels. Fortunately, a strong young man came to the aid of all 4 of us. He picked up my front wheels, put them on the sidewalk, and off I zoomed. The shrubbery was unblemished and the mulch can be replaced. My ego was bruised but healed quickly. Another adventure to remember and laugh about.