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Back to life...Back to reality...

9/19/2019

1 Comment

 
​tell me, who is humming the song in their head?
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Algonquin
I'm back!

After a much needed vacation from blogging, I am reengaging.

Today is the official 6 year anniversary of my diagnosis.

A few posts ago, I shared the difficult journey of living with ALS for 6 years for both myself and Travis.  

We literally saved each others lives and made a commitment to ourselves to focus on recovery and honesty instead of avoidance. 

Travis had to take medical leave from work and we spent the summer reaching out and accepting help on many different fronts.  Recovery is a full time job.  We each had several appointments per week including but not limited to psychotherapy, hospice help, social work, occupational therapy, physiotherapy, doctor's appointments, etc.  We treated the whole person, physically, mentally and emotionally.  Travis began running and swimming.  To enhance our "new phase" in our journey, we redecorated our apartment.  In fact we were so committed, we felt overwhelmed with appointments and I had to give us Sundays off to reconnect as a couple and take a weekly break.  It was nice to experience Sundays as normal families do!

We are so grateful to Dayne for flying to Ottawa not long after our hospitalizations and being there for us.

We took a 3 day vacation in Algonquin Park, for me, there is nothing more healing than being in nature.

We spent quality time with friends and family.

We were also fortunate enough to take a bucket list vacation in New Brunswick and Prince Edward Island.  Check out our Awesome things on the Travel page of this blog as well as photos on the Gallery Page.

This year, I had given up and felt like I had nothing more to share.  I was exhausted from focusing on ALS and had nothing left in my tank.  Looking back I feel that was the depression talking.  After taking a break to focus on recovery I feel ready to return to advocacy.  
 

My advocacy includes:

A new page on my website called "Tips & Tricks" for living with ALS.  It is currently and will probably remain under construction!

Increasing my involvement with the International Alliance of ALS/MND Associations.

This month I am attending the 2019 Ottawa Hike to End ALS.

I also continue to connect with others living with ALS to be a sounding board to help navigate the impossible situation of such a devastating diagnosis.
And with our upcoming election, continue to push for our Government to invest in ALS research funding.
Each year ALS Canada develops a pre-budget submission as part of the Federal Budget consultation process led by the House of Commons Standing Committee on Finance. Each submission has focused on the need for direct ALS research funding, including calling upon the federal government to support CAPTURE ALS and Project MinE.
To keep ourselves honest, we are definitely not celebrating today, however, we are addressing and acknowledging it.  I am going to therapy while Travis is at work, to deal with the emotions associated with reliving the day of my diagnosis.  And we are going out to dinner because we deserve it.
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Tea for Two celebrating Chelsea & Eric's wedding
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Visit with timeless Kanawanian friends Deb & Adrian
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Puzzling - my favourite hobby
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Custom Cat Tree Building - Travis's favourite hobby
1 Comment
Dad-Allan
11/30/2019 09:19:27 pm

Impressive 'Tips and Tricks' page Carol. It looks very practical and helpful. I'm sure that others who get to see and read it will feel they have stumbled onto a gem. I wish I could wind back the clock and point out your website to the lady and her husband we met on the Auckland 'Walk2'DfeetMND'

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    Carol Jean Skinner (née Sharman)
    born October 19
    lives in Ottawa, Canada

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carol skinner  - rolyskinner@gmail.com
travis skinner - skinnertravis@gmail.com