Welcome to my blog. I have had ALS for 10 years now.


Since I started this blog in June 2008 I've had amazing feedback. Family, friends, people from all over North America, Australia, Scotland, England, and places I can't recall, have commented, encouraged and corresponded. I had no idea when Cynthia taught me how to set this up, how much I would love posting and how many people would read it. I want to say THANK YOU to everyone who has helped propel this therapeutic exercise into a daily routine. All of you, both friends and visitors, are now part of my blog family. Welcome.

From Go Pro

From Go Pro
View from my living room

Monday, June 29, 2009

Coming Home

Home is great--but I do have to be honest and say I miss many of the new friends I made--staff and patients. Everyone has a story and I heard many that were fascinating capsules of lives well lived. They will always stay with me.

Today was beautiful once again and I got to go out with a couple of friends.
I need the change.

I'm adjusting to 24 hr. care but still find it strange. Stay tuned.

Sunday, June 28, 2009

Beautiful Day!

This is one of the many wonderful pathways at UBC, near the hospital I was in.  Squirrels entertained me on my outings. The trees on campus are so varied in species as are many of the shrubs and flowers. I enjoyed every outside experience. 

My hip replacement is continuing to heal but I still can't sleep on either side. I dream of the day. The Doc said it would be 2 months because of the weakness from ALS. Patience is a testing virtue.


Saturday, June 27, 2009

Tired but adjusting to home

For those of you who haven't been out to the UBC campus for awhile, this is part of a new development on Westbrook, across from the War Memorial Gym.
On one of my many outings while in hospital, I explored the new construction.
The roads and pathways on the campus are perfect for wheelchairs.
As many of you know, the weather co-operated for me during my stay.

Friday, June 26, 2009

I'm getting settled

I'm very tired for some reason but getting settled in.
I hope to post pics from my rehab adventure and the UBC campus soon.
Thanks again for all your support.
Love,
Karyn

Tuesday, June 23, 2009

Home tomorrow!!

I'm doing well and will catch you all up when I'm home and settled.
Happy summer!

Saturday, June 20, 2009

Days are going fast


I'm sitting in Starbucks  on the UBC campus at the corner of East Mall and Agronomy St., sipping a caramel macchiato and writing to you. I wonder what my friends like Cynthia and the members of my writing club and others have been writing and/or painting?
My ALS pals, I'm sure, are making the most of each day and facing challenges with more panache than King Henri the lV. 
I can now sit myself up on the side of the bed and get myself into bed with baby transfer steps. 
After I'm home I'm ordering a new wheel chair with all the bells and whistles. With power recline and tilt, I'll be able to snooze in my chair. It will be the new model of the Invacare TDX SP. The reasons I chose this over the Permobil were:
Smoother ride over bumps outside(good shocks)
Tighter turning radius indoors(mid wheel drive)
Good back support for me
Parts are easily available for repairs
Cost is about 32,000.00 but my insurance is paying for most of it. Hooray for that.

It will be "Grasshopper Green"..fits my personality and can be easily seen by cars.

I'll try to include a picture and link to site for other ALS PALS. I demoed both Permobil and Invacare and was surprised at my choice. 

I'm feeling good and have little pain. My shoulders are weakening making dressing difficult but I have help. My goal is to be cruising up Granville street soon and down to Granville Island and sending you photos of my adventures. I still love life, have met many fascinating people in hospital, and have regained my fighting spirit. My 97 year old room mate calls me "a wonderful soldier." 
Please keep the good wishes flowing as I love all your comments online, by card, and in person.
I have the best group of friends and family a person could have.
Love to you all,
Karyn

Tuesday, June 16, 2009

Another day closer to home


I'm working through the organization of going home with careworkers full time. VERY expensive.
Everyday brings new progress and some ALS weakness to challenge me.
Right now I'm in the UBC Science Centre enjoying a real cup of coffee and the computer. I have to leave soon to practise walking with my walker while the the physio hangs on to the back of my britches. 
I'm loving being on campus with the young people even if my home is  hospital. This is a gorgeous campus to scoot around in a power chair. The local coffee shops are getting to know me. There is something positive in this painful experience.
Love to everyone,
Karyn

Friday, June 12, 2009

I'm going home on the 24th!!

I just managed to get online through a dear friend at UBC.
I want to thank you all for your prayers and well wishes.
I've made good progress and can hobble with walker to transfer from bed to wheelchair etc.
I am working hard to maintain strength and balance.
Soon I will be home and bombarding you all with pictures and trivia.
Keep sending healing energy.
Much Love,
Karyn
PS I'm emailing from the UBC Science Building and feel like a student again!!

Wednesday, June 10, 2009

Sorry it's been so long between messages must confess I've been tardy,anyway here's the latest news from Karyn,over the past 2 weeks she has physically improved,she can now stand and transfer from bed to chair and is currently testing new models of power-chairs that will allow her more flexibilty,she gets dressed and goes for physio every day and ventures outside for coffee or to sit in the garden for lunch with friends,she now has access to her laptop so that is really positive because her main complaint is that she's bored.
Tomorrow a couple of friends and family will attend a meeting with Karyn and her health care team to start the process of arranging the care and support she needs to return home,she's hopeful that might happen next week.I will post another message when we have information about her discharge.
Barb.