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

Saturday, August 29, 2009

Bette Midler--always makes me want to dance

Boogie Woogie Bugle Boy

An apple per day keeps the doctor away


I visited with Dr. Jeremy Road, my respirologist, Wednesday. My FVC had dropped over 10%. This is worrisome to me as it falls in the "caution" area.

FVC - forced expiratory vital capacity

The volume change of the lung between a full inspiration to total lung capacity and a maximal expiration to residual volume. The measurement is performed during forceful exhalation; the preceding maximal inhalation need not be performed forcefully . The volume assessed is the forced expiratory vital capacity (FEVC), commonly called forced vital capacity (FVC).

When I decrease to 60% I will be put on a wait list for a PEG(feeding tube). Although I may not need it right away, I will eventually, and they don't like to do the procedure when your FVC is below 50%.

I started in 2007 at 110%, then 96%, 85%, and now 73%. I seem to drop 10% every 6 mos. Although the doctor isn't worried, of course I am. I was originally hoping I'd be one of those lucky ALS patients who had strong FVC for years. One has to dream of the positive.

It's rather ironic that I developed ALS as I hate change. With ALS, you just get used to one change and another rears it's annoying head. I'm learning to adapt quickly--but not without frustration and tears. I've had some practise adjusting to change--regarding my clothing size. LOL.

Oh well, I have today, and tomorrow and ?? Living in the moment and enjoying every day becomes more poignant.

Hug your loved ones, phone that old friend, because "you just never know."


Monday, August 24, 2009

I know how she feels.

Sunday, August 23, 2009

To Market To Market To Buy A Fat Pig Home Again Home Again Jiggety-Jig





I love going down to Granville Market. It's only a 10 min. drive in my power chair. The fruits, fish and flowers, and almost all things you need are there. Musicians, tourists and locals make it a "people watching" playground. Whether I go with a friend or Caregiver, I always take time to inhale the ocean breeze, watch the boats and of course have a muffin and coffee.

Friday, August 21, 2009

ALS is an expensive disease

$60,000.00 wheel chair van
$18,000.00 per mo. full time care by qualified care workers
$35,000.00 fully outfitted power chair
$3000.00 hospital bed
$6000.00 bath equipment and remodel
$2000.00 lift chair
The list goes on and on and on and on.
Thank heavens for ALS society, insurance and donations. Unfortunately the government doesn't help at all--they say, "Move to a Home." Well, I'm not ready, and I'm not going. I'll wait until I'm broke. The wait may not be long. LOL.

What's in your attic?


I just read a great Blog written by a neuro nurse who has ALS. One of her topics was, "What's in My Attic?" This is an excerpt:

"Hmm, what is in this box? Oh!! No, don't look! Here, give me the tape. This one is stuff that is not for anyone else to see. No, I don't have any deep, dark secrets! It's just stuff I don't want to have to explain. I don't have much privacy in my life now, so I am keeping my past to myself. I don't mean just physical privacy. It is an invasion of privacy to have to have someone else dress you, help you to the bathroom, and all that, but it isn't so much what people see as what they know. I can't hide a stash of chocolate, try smoking pot, spend money, buy a present, try a new hairdo, read a book, change my clothes, or put a tape in the VCR without somebody knowing. 99% of the time it is no big deal, but I would like to be able to read "Final Exit" without anyone knowing, re-watch the Beatles Anthology without my family wondering if I have crossed that thin line between fan and pathetic nutcase, and toss out a whole stack of misprinted pages from the computer without anyone knowing I screwed up! There, it is sealed shut. Just label it "Privacy."

Well, enough of this. Stashed away up in this attic is my identity, all my tomorrows, my control over my own home, my freedom to make choices and come and go as I please and when I please, my ideas of the marriage and kind of love I hoped to have, and my privacy. All lost to ALS. Someone in the ALS group once remarked that the ongoing nature of the losses is what makes ALS so hard to deal with. It isn't like an auto accident where you come out paralyzed. That is a huge loss to adapt to, but people do adapt and go on with their lives. With ALS you no more than adapt to the loss of one function when you find you are losing yet another. Losing the physical ability is only the tip of the iceberg. You lose so much more. The attic gets more and more crowded.

Thanks for listening,"

Wednesday, August 19, 2009

This Ol' House

I love this house on 7th Ave.
Click for song.

Tuesday, August 18, 2009

Yummy Panini

My niece and I munching down our
lunch at the Wicked Cafe.
We had a great day!

Wednesday, August 12, 2009

Hope


ALS Message Of Hope

ALS may rob you of your physical body, but it does not rob you of your soul.

You live in a society that emphasizes patient autonomy and you will be able to maintain yours.

While embarking on a difficult endeavour, know you are not going it alone.

Families and friends can come closer, and you will discover new friends.

Other people with ALS are available and willing to share in the ups and downs of the journey.

There are many dimensions to managing ALS and many professionals available to help you with them.

The resources currently available to those affected by ALS are without precedent.

You continue to be a valued member of society who can contribute to your family and your friends through the human values in which you believe.

You continue to play a role in educating your children and providing support to your family.

Due to the intense interest in people with ALS, the options available to you exceed those that were available to previous generations and are expected to increase.

While no one has chosen this path, most have traversed it with courage and with dignity.

From: ALS and Beyond
Carmel Armon, M.D., Loma Linda University, Loma Linda, CA





Monday, August 10, 2009

Another Story

Al Pettit was a Captain with the Mississauga Fire & Emergency Services for almost 33 years before retiring with the goal of traveling with his wife Lee. Shortly after Al retired, however, their plans were interrupted when Al was diagnosed with ALS in October 2003. Suddenly, Al had a new goal – live life with ALS.

“When I was diagnosed I already had an idea of what I had because of research I did on the internet,” says Al. Yet, when his doctor said, “Sorry but you have ALS,” he felt like someone pulled a black hood over his head. “You feel like you will never see daylight the same again.”

With the help and support of family and friends Al began to see that ALS is not the death sentence as he first feared. Al’s positive outlook and perspective on living with ALS has motivated him to get more involved with the ALS community and savour the many joys of life. Joys that include a successful marriage of over 36 years, two beautiful children and the births of his two granddaughters.

Al has promoted ALS awareness in his local community, organized a team in the Walk for ALS, and continues to moderate and provide emotional support through the ALS online forum.

If you ask Al how he lives with ALS, he will say:

“You begin to realize that you can be living with ALS or dying of it. I’ve decided to live with it. One day at a time.”

Sunday, August 9, 2009

My hospital roommate in June

When in hospital, this puppy came to visit me every morning while his human Mother taught me how to dress independently. He was very patient and I was very slow. I learned how to put socks on with the help of a gripper wand and how to get a T-shirt on by putting the weak arm through first. Often I get stuck in my shirts as I don't have the strength to untangle them. It's quite a funny sight and I always start laughing--this makes the task even harder!

Thank You

I WANT TO THANK ALL OF YOU--
You keep my spirits up when days are grey.
Also thanks to my many friends and family who visit, send cards, notes and/or phone. I love you all.

Wednesday, August 5, 2009

You gotta love him

You've either got it or not. This guy has got it.
I'm sure he'll grow up to be a politician--he's got the look that would bring in votes.

Sunday, August 2, 2009

Bronze Statues


There is a wonderful display of 6 bronze statues outside the Vancouver School Board Complex. I went to the small park while waiting for Chapters to open and saw them for the first time. They are all portrayals of happy children--and best of all for me, all can be accessed by wheel chair.