Wednesday, October 7, 2015

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

Wednesday, August 19, 2015

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).


Friday, May 15, 2015

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

Wednesday, March 25, 2015

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.