Update on my health

I haven't updated my disease progression for sometime since it's rather boring and not exactly uplifting. However it's my style to be open so here is my report.

My voice continues to weaken but still not bad on good days. My breathing is holding at 41% and I've been given a BiPap and a new mask. The resp. doctor wants me to use the BiPap machine during the night, but so far I only use it 2 hrs. per day. I may regret my stupidity.

I have my carers feed me as I can't lift my arms high enough to manage a fork or spoon.This also prevents me from finding a comfortable position to type. My reach distance is about 10 inches.

My neck muscles have weakened and my head falls to the right. I have a strap that can be cushioned on one side but it doesn't work well and I find it hot. Next week I'll get a neck collar and try that.

This sounds like a Waaa Waaa column but trust me it's not. I do get in a bit of a slump some days but I always bounce back with the help of self-talk and my friends. All in all, I'm doing well and eager to go on adventures in the sun. I'm hoping to go on a sail with the handicap program at Jericho this summer. I still have goals--I haven't given in to ALS. I never will.

Celebrating 2 yrs. with my wonderful Care Aides

I'm so privileged to have the finest care from these RCAs. Tess and Regina have cared for me through the good times and the rocky times. I thank them for their dedication and I thank Nurse Next Door for sending them to me.

I See The Light

A beautiful song from "Tangled" by Mandy Moore and Zachary Levi.
Click here to listen.

A blissful afternoon

I went to the Market today and sat by the boats. So many European tourists shopping and enjoying the sunshine. I love to "people watch". After purchasing a lime green pot for my yellow orchid, fresh local strawberries, a cantaloupe, and a gooey cinnamon bun, I meandered through the park admiring all the wild roses and came home with sun kissed cheeks. A blissful afternoon.

To die or not to die

Whether you live alone or have a family, finances weigh heavily on the decision to prolong your life with ALS.

When you need paid care, a special vehicle, etc., etc.,---unless you are very wealthy, have excellent insurance, or a retired partner to care for you, the idea of a tracheostomy becomes an impossible dream. 24hr. care is mega expensive and the governments of Canada and U.S. show no mercy.

Email ALS friends who have passed away

Friends

I am only as strong as the coffee I drink, the hairspray I use, and the friends I have.

Don't Worry, Be Happy

“Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...”

Isak Dinesen

Happy Dance

I'm well and do the Snoopy happy dance every time the Canucks win.

A favorite of mine I shot from my den this winter

My friend

Many have asked if the bird was real--yes it was. I guess he was trying out his wings and he couldn't make it back to the nest. My blanket was a soft place to land.

Vancouver/Richmond ALS Walk

to everyone who came out in the chilly weather, to all those who donated and of course to the baby Starling who had a chat with me... and thank you to the niece who donated the prize I won. I too will remember your Aunt who passed away from ALS.

"Monster Tulips" photo from my patio by Kristina

I dream

I reached my goal for the ALS walk on May 28th

Thank you to everyone who contributed. I raised $3,130. Yahoo!

Excellence in Engineering

I'm so proud of these UBC engineering students who won first prize for their eReader project. It was my privilege to meet four wonderful people who carefully listened to my needs and developed an eReader with a stand that I can use and enjoy. As an ALS patient who is gradually losing my ability to do "normal" activities, I welcome any device that enhances my lifestyle. Now I can read a book with the click of a mouse while relaxing in my power chair.

Be your true self

Let the world know you as you are, not as you think you should be, because sooner or later, if you are posing, you will forget the pose, and then where are you? ~Fanny Brice

ALS Awareness Month

May is ALS Awareness Month in U.S. and June in Canada.

I grieve for my PALS living with ALS and the many I met online who brightened my life for a brief time and then were taken by this disease that shows no mercy.

Some are so young and have children who struggle to understand their impending loss. Some are elderly and have difficulty managing any electronic devices to compensate for loss of speech and mobility. Regardless of age, it is an ongoing struggle.

Please talk to others about Lou Gehrig's Disease /ALS and support the 40,000+ living with this disease in North America. Donate to your local chapter and/or walk in one of the many Walks for ALS.

We need your support. We need a cure.

A spring afternoon

Cavalia--a wonderful show.

I went to Cavalia--http://www.youtube.com/watch?v=np8WJ_2TbLA--watch here.

Fortunately for me, it was a treat from a good friend.

I would recommend it to anyone who appreciates the bond between trainer/rider and horse.

Here is a few photos from my adventure.

Nancy O'Dell and ALS

"ALS is a master of destruction and I can testify to that first hand. My beautiful mother had ALS and the courage and grace she showed throughout her whole journey with ALS was nothing less than extraordinary," said Nancy O'Dell, the Emmy Award-winning Entertainment Tonight co-anchor (see video). "So how do you go up against a master of destruction? Well the only way is to create a masterpiece of compassion and hope and that's what MDA's ALS Division is giving people with ALS."

Our Last Summer

http://www.youtube.com/watch?v=Z6YqC3D0GMo&feature=related

I remember it well.

I would rather sit on a pumpkin and have it all to myself, than be crowded on a velvet cushion. ~Henry David Thoreau

5th anniversary of our writing club

Some times you just need some peace and quiet

A Spring outing with my camera.

Update

I'm fine--just been busy.

I got new real lamb's wool elbow protectors to stop the abrasions on my arms and had geometric gel padding put in my power chair back to alleviate a spinal pressure point.

I'm trying a new medication to minimize the shaking so I can raise a fork or spoon to my mouth without flinging the food far afield. I hope it helps.

PROP brought me a full face mask for my BiPap that I can wear glasses with. This enables me to fall asleep watching T.V. It is a new model, but seems to work well.

Thank you for all the birthday wishes, cards, cakes, and gifts for my 65th. I was spoiled and loved every minute.

ALS Walk Richmond/Vancouver

I’m participating in the WALK for ALS and I’d like to ask for your support.

ALS is a fatal neuromuscular disease with no known cure, cause or effective treatment. The WALK for ALS supports provincial ALS societies and their programs to help people with ALS and their families, and the ALS Society of Canada’s investment in breakthrough research…help and hope!

It is my hope that you will consider sponsoring me by making a secure online donation using your credit card. Click on the link below to donate now...

http://my.e2rm.com/personalPage.aspx?SID=2935100&Lang=en-CA

Thank you for your support!
Karyn

P.S. Here are some additional ALS facts:
* Two to three Canadians die of ALS each day
* Approximately 3,000 Canadians currently live with ALS
* In at least 90% of cases, ALS strikes individuals with no family history of the disease
* Between 5-10% have a familial form of ALS, devastating families for generations
* ALS can strike anyone, regardless of age, sex or ethnic origin
* While the usual age of onset is between 55 and 65, many younger people, often parents, are afflicted
* Nearly 90% of people with ALS died within 5 years of diagnosis. While some live longer, others die within a few short months
* ALS affects the whole family
* ALS is a costly disease - emotionally, physically, and financially.

For more information on how YOU can become a walker yourself, please visit www.walkforals.ca

Richmond-Vancouver Walk

Location: Garry Point Park, Steveston

Date: Saturday, May 28, 2011

Walk Registration: 9:00 AM

Kick Off: 10:00 AM

Estimated End: 1:00 PM

Contact:
Vandhana Misri
(604) 880-0561
richmondvancouverwalk@alsbc.ca

My 3 cakes--I'm still celebrating.