My Last Post

Tomorrow I go in to hospice.  I know that Thanksgiving is right around the corner and I have been counting my blessings.

Here are some things I am grateful for...

Family - we had our dysfunctions like everyone else, but at the core there is love.

Friends - old and new, they help me through my days.  Some have gone above and beyond during this     journey.

Travel - I have been to so many lovely places in the past 13 years.

ALS - I will never be happy I got this disease, but there are some positive things...I raised awareness and funds for the cause.  I heard from many about my meaning in their lives.  And apparently I have a great smile.

Care - the clinic where I went couldn't have been better.  All the staff were open, kind, and helpful.

Support - the ALS BC group provided me with things I needed right from the get-go...info, support groups, equipment, psychologist, and more.

Margaret - despite her protestations that it didn't come naturally, she has taken very good care of me through this journey.

There are so many other things, too numerous to mention.

My energy is failing, so I will sign off now.

Keep me in your thoughts.

Sheila

The update I didn't want to write.

Life has become increasingly difficult.  The only thing I can do for myself is smile.  All four limbs are useless.  My lung function is greatly reduced.  All my food and water goes through a tube into my stomach.  So long to the 5 o'clock vermouth!

We went to see the Richmond Hospice last week.  It is very nice, and the staff were friendly and informative.  I have decided if my disease doesn't take me before, I will stop feed and water in October and go into hospice.

I am not afraid of death.  It makes me sad.  I have so many people I don't want to say goodbye to.   I had so many more adventures I had planned.

I will make sure to vote in the early polls (I am my mother's daughter).

There's good news...and there's bad news.

This is the post that I thought I wouldn't have to do for a couple more years.  Unfortunately this damn disease is getting ready for its last kick at the can.  My lung function has significantly decreased and my limbs, neck, and core muscles continue their deterioration.  I have been referred to the Palliative Care Team.  These referrals happen when there is a life expectancy of around six months.

That was the bad news.

The good news is that I still have a smile on my face.  I've had nice visits from family and friends, and I still find joy every day.

On June 6th I will be participating in my last walk for ALS...if you would like to donate, here is the link:
 https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=2809917&langPref=en-CA&Referrer=&Referrer=http://www.walkforals.ca/en/bc

Learning to talk again

I have had some significant losses on this journey-the ability to walk and to use my hands, no more cooking (my passion), no more photography (my other passion)-but the loss that I'm now facing is the most devastating one yet.  Those of you who know me know how much I like to talk...in this regard, I am my mother's daughter.  Now the muscles needed for talking are failing, my mouth, tongue and muscles supporting the vocal cords are all affected.  Consequently, it is very difficult to understand me and I don't talk on the phone any more.  I love to get newsy e-mails from friends and family, as long as they know that I am unable to reply.

Three years ago, I completed a long and tedious task and I'm very grateful that I did.  I recorded 1,610 sentences for an American group that was beta-testing a program called "Model Talker".  Now my voice has been put in to a communication machine for me.  Now I face another long and arduous process, to become proficient.  They put a little dot on my glasses and when I move my head, the mouse moves.  When I have typed what I want to say with my head mouse, the machine will speak what I have written, in my voice.  I can save favorite words and phrases to save myself some time.  I'm just starting to learn now, I think it might take quite a while.

A Long Awaited Update

It has been nine months since my last entry. Unfortunately, I don't have any bundle of joy to show you.Thankfully, I have little joys every day.

There have been several significant physical changes , I am now in a power wheelchair all day.  My lower legs have lost most of their muscle, so sitting is much safer than standing.  My left shoulder is "frozen" and my left hand drops and does not work anymore.  My right arm and hand will follow suit in   the near future, I am sure. My voice has deteriorated quite a bit mainly there are many letters that i cannot say clearly anymore. It is giving my brain a good workout when someone does not understand me and I have to think of different words to get my idea across.

It amazes me that despite all of these changes I still feel very joyful.  Every day something will happen that makes me happy.  I am not sure where this attitude came from,( I suspect my Mother may have had something to do with it), but it sure makes  the days easier.
 
I wondered what my body would look like as I started to lose muscle - would I look like a Shar-pei with extremely wrinkled skin ? Not quite.
On instruction, I am trying to keep my caloric intake up.This includes ice cream every day! With my skinny arms and legs and my big belly intact ... if I could stand, I would probably look like Big Bird.

Walking

Since I moved to Vancouver in 1981 I have walked for many causes.  I did the AIDS Walk many times.  I did the Run For The Cure for breast cancer also many times.  Now I am doing the Walk for ALS. I had my heart in every walk I ever did, but this one seems much more urgent.
There is no treatment and no cure for this disease.  They don't even know the cause!

Money raised during this Walk goes to support people with ALS [60%] and toward research [40%].

Please consider making a donation -
http://my.e2rm.com/PersonalPage.aspx?registrationID=2218021&langPref=en-CA&Referrer=http%3a%2f%2fwww.walkforals.ca%2fbc    

Feeling fine

When people ask me " how are you" I often have the usual reaction and say " fine".  What I really should tell them is that the disease is progressing, but that my heart/soul/spirit is feeling fine.

All my limbs are weakening.  My hands can do very little, my arms are weak and my legs have very diminished strength.  The talking and swallowing muscles are starting to be affected.  I'm also developing some of the other unkind symptoms of this disease -excessive yawning, excess saliva.  The good news is that I had my breathing tested 10 days ago and my FVC was 98%.
The balance center in my brain has been affected.  That, in combination with my weak ankles and legs, has contributed to the three falls and many near misses I have had in the last two months.
But I really do feel " fine".

Margaret

When I was first diagnosed, we had a little uh-oh chuckle when we acknowledged that I am the natural caregiver type ... Margaret .. not so much. As she said, she was no Florence Nightingale !
Well, Florence or not, she has certainly risen to this challenge.
She has been with me every step of the way. From the moment I wake up until I'm asleep at night, she has been doing things for me. A typical morning will include - make coffee, get breakfast, turn shower on, put cream on my face and body and product in my hair, load toothbrush, help me dress, open or close at least 10 things for me ... and we're not even at lunchtime yet (which she will make).
She is very intuitive and will often think of things for me before I do. When I am faced with another challenge, we brainstorm together to find a solution.
It bears repeating - I am so lucky to have her in my life !

I'm back ....

It's been a while since I posted here. June and July were busy with the dragon boat team and on August 8 Margaret and I left on another one of our wonderful adventures - Ypres, Paris, Brittany, Northumberland, a two week cruise of the Baltic Capitals and St Petersburg, and then eight days in London - 46 days total !

I was a little worried about how I would manage, but I had a cane for balance when I was walking short distances and a great little mobility scooter for our longer outings.

I have been asked what the highlight of the trip is for me and, without a doubt, it is people. We had wonderful week long visits with friends in Brittany and Northumberland, short but sweet visits with friends in London, and two great weeks with brand new friends on the ship.

Now we are home and reality has slapped me in the face. It seems that there are a lot more things I can't do.It feels like I ask Margaret 100 times a day to do something for me.I am so lucky to have her in my life !

In the picture above I am taking a photo of a cornflower. It is the symbol for ALS. Margaret grew them for me this year.

Hope

Yesterday I got the ALS BC newsletter. On the front page were thumbnail sketches of 8 prominent Canadian research developments that have happened in the last year. Those project all received funding from ALS Canada. It is because of things like this that I feel so passionate about raising awareness and raising funds. The funds support the research and the research supports the funds.
The Walk For ALS happens in my community tomorrow. Please consider raising a little hope by making a donation at http://my.e2rm.com/personalPage.aspx?SID=3633037&LangPref=en-CA
The page will be open until the end of the year.

Identity & Independence

Physically, it's the loss of muscle and strength that is happening. As muscle disappears, so does functional ability. The fact that I can't hold a sewing needle is not a big loss to me. When I was able-bodied I had to take my pants out to be hemmed ! The losses that affect identity and independence are the hardest. Being a good cook has always been a strong part of my identity. That is slowly but surely being chipped away.  It's either difficult or impossible to open packages, peel and chop vegetables, trim or cut meat, drain a pot, pour a full kettle ... the list goes on.
Independence - it's the "firsts" of these losses that hurt the most. The first time I couldn't open the front door, do a button or a zipper, open a milk jug or a pop can, rip an envelope ... this list goes on as well. It's the first times that catch me by surprise. After the initial reaction (sometimes a mini-meltdown) we begin to problem solve. Either figure out a way to do it differently or accept that I need to ask for help.
Although there are lots of things I can't do (and I know there's a lot more to come) there are a lot of things I can do. I can wake up each morning and know that I will try for the best day possible. I will continue to have wonderful adventures with Margaret. I will appreciate the beauty in the world around me. I will revel in the joy of family and friends. I will love and be loved. I will laugh till I cry and cry till I laugh.                                                                                                    

The Race Is On !

Another year has passed.
I am one year closer to my final days (well really, aren't we all) BUT so are the scientists/researchers one more year closer to finding the cause and cure for this devastating disease. It feels like a race -
I hope they win.

Please help them get there first by donating to the Walk For ALS.

Donate here

The Struggle Continues ...

 ... that is the motto of the union that I proudly belonged to for many years, but it could also be the motto of living with this disease.
ALS is progressively degenerative and with each new change comes the challenge of adapting how to do things or knowing when to ask for help.
As a couple, we are on a giant learning curve that keeps changing.
I have lost strength in my arms and my legs.My hands have lost a lot of their functional ability and my fingers rest in a curved position.Happily, my breathing has not been compromised yet. In fact, my last breathing test was slightly better than the one before.
 Just as I was prepared for the "struggle" during my working life, I am prepared for it in my life now.
I may be losing muscle, but I'm not losing spirit.

Happy New Year !

I was still awake when the clock struck twelve. Margaret had gone to bed and I was alone. There were firecrackers popping all over the neighborhood. I escorted the old year out the back door and walked to the front. As I stood there I had a moment of sadness when I wondered how many more New Years I would live to see. That thought was quickly overtaken by gratitude for being able to celebrate this one. In the dark, on the edge of 2013, I counted my blessings. Then I welcomed the new year in through our front door.

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."