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.