Attitude

 It's been 9 months since I first heard the words and 7 months since confirmation of the diagnosis.

I have found a strength inside of me that I didn't know I had. And it has brought me a great sense of peace.

I know what the ugly end stage of this disease looks like, but I will not entertain those thoughts until they get closer to my current reality.
Living in the present and enjoying it is how I am choosing to conduct my life.
It's not that I don't have sad moments, but they are acknowledged, accepted, and then they move on.
 It's not going to get me until it gets me !

I started writing my "bucket list" in January and have now been able to cross two things off. The pictures here are from our recent fabulous trip to Haida Gwaii, the first item on my list.

Clinic Visit

 We saw Dr. B and the ALS team this week. For the first time in my life, I am happy to be "slower than average".
Even though my hands look quite a bit worse, the functional tests don't show huge changes. My legs are still strong and my arms are only minimally weaker.

The "typical' progression in my case would be hands - arms - then respiratory or bulbar (mouth and throat) muscles. As we know, this disease is not reliably predictable and there are always exceptions.

I did a breathing test so that they could have a baseline reading. The computer analysis showed that I blew 104% of what was predicted !

Next appointment in November.

The Walk For ALS

 Thanks to everyone who donated to the cause and a special thanks to my "posse" who joined me for the walk.    I raised $5,353.  

Some helpful links

Some easy to understand fact sheets from ALS Canada -
www.als.ca/en/publications-and-resources/als-fact-sheets

ALS Society of BC -
www.alsbc.ca 


ALS Society of Canada -
www.als.ca


ALS Association - U.S.A.
www.alsa.org 

Some notes about this blog

Except for pictures that I'm in, all others were taken by me.
You can put your email in the box on the right and then you will be notified when there is a new post.
If you want to make a comment, click where it says "(no)comments" at the bottom of any post.

Some FAQ's

 WHEN DID IT START ?
The first two finger spasms I had were at work on Jan.15,2010. The first time I noticed something I couldn't do (make the letter "R" in sign language) was a week after I retired in April 2011.

WHEN WERE YOU DIAGNOSED ?
I was first told on Nov.23, 2011. The diagnosis was confirmed by the ALS specialist on Jan.3, 2012

IS THIS A COMMON DISEASE ?
Not at all. In British Columbia (pop. 4.6 million) there are just slightly over 300 people with ALS.

IS IT HEREDITARY ?
Only 5-10% of cases are. All the rest (90-95%) have no family history.

WHAT ARE YOUR SYMPTOMS ?
All my symptoms are in my hands. Several of the muscles have just disappeared. This has caused me to lose some strength and a lot of fine-motor function (buttons,zippers,nail clippers,turning keys,cutting food,etc).
I am getting inventive with adaptations to help me with tasks and the Occupational Therapist has been helping me with a bunch of other things. If there's something I can't do, I just ask for help.

HOW WILL IT PROGRESS ?
Each patient is different, but since mine started in my hands it will progress to arms and then to feet and legs. It will not "jump" from hands to those muscles that support breathing and swallowing.
I have appointments at the ALS Clinic in May, August and November. After a few visits, the doctor will be able to get a better idea of how quickly things will progress.

ARE YOU WELL SUPPORTED ?
Incredibly well ! I have family, friends,acquaintances,and neighbours who have all expressed their love,support, and offers of help. Medically, I have my own wonderful GP as well as the fantastic team from the ALS Clinic at GF Strong. The ALS Society of BC has also been a wealth of information and support.

WHAT CAN I DO TO HELP ?
Pray.  Hope. Wish.

Currently I am managing well with the help of my loving partner (and some handy "aids for daily living").
When the time comes that I/we need more help we will use the Lotsa Helping Hands website where you can sign up to be part of my helping community.

The Strength Within

Live Strong .... Be Strong

.... some days are harder than others

But most days still feel good. My inner strength is nourished so well by the love and support of so many.

I'd like to thank you all for what you have done and for your offers of support and help. We will be calling on you when the need arises.


I read an article today about some exciting research that was done by an ALS-Canada funded researcher at the University of Laval, Quebec. Like all research, the research that will bring about a cure to this devastating disease needs considerable funding. If you are able to make a donation, please consider sponsoring me on my personal page at the Walk For ALS.
http://my.e2rm.com/personalPage.aspx?SID=3231359&langPref=en-CA

the diagnosis and the "push"

Amyotrophic Lateral Sclerosis ... ALS

• A = absence of
• myo = muscle
• trophic = nourishment
• lateral = side (of spine)
• sclerosis = hardening or scarring

Three little letters, but can they ever pack a punch !

After some time to digest the news .... I'm just going to punch back.

On Jan. 3 we saw the specialist, Dr. Hannah Briemberg, at the ALS  Clinic at the G.F. Strong Rehab Centre.
She did some more testing and confirmed the diagnosis. With the history and examination she thinks this is probably slow progressing. She really won't be able to tell for sure until she sees me over a period of six months or more.
There is a full complement of professionals on the ALS team. I have all their numbers and emails.

Unfortunately, we all know what the public face of ALS looks like. But that is not me. I have lost some small  muscles and fine motor function in my hands. My arms and legs are strong and there are no problems with breathing  or swallowing.

Dr. Briemberg said that attitude was very important in dealing with this disease. Fortunately, I have lots of attitude ! Really though, Margaret and I have always tried to live our lives well each day. She and the other women of Abreast In A Boat have led the way in showing me how to do that.
Dr. B wrote this to me -
"....... I will share my philosophy about life in general....being in this business, I can say that none of us knows what is around the corner and, if you are able, it is best to do what you want, when you want rather than putting things off.  I think this goes for everyone and not just people with ALS.  Unfortunately, it often takes a bad disease, however, for people to get the "push" to do this."