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Sat, Sep. 1st, 2007, 11:30 am
Upcoming ALS Walk details


Hi everyone:
As I mentioned a couple of weeks ago in Colin's blog, the ALS Assoc of Oregon and SW Washington is holding its annual Walk to D'Feet ALS fundraiser this month -- Sun Sept 9th -- and once again, "Colin's Friends" will be there. I know it will be sad that Colin will not be with us but this was one of his favorite ALS activities so it feels good to keep up the "tradition".  

Several of you joined us last year and I hope you will be able to do so again.  There is a new location for the walk, along Portland's beautiful Eastbank Esplanada and lots of fun new events during the walk.  Registration begins at 10am and the 3-mile non-competitive walk begins at 11am.  You can also register online at
http://walkor.alsa.org.

The other great news is that
for the first time in Walk history All expenses for the Walk to D’Feet ALS have been fully funded by the generous sponsors!. This means that all money raised by teams and individuals will go directly to our local services and programs.

So here are the details of the Walk.  Hope to see you all there and Thank You so very much for all of your help and support over the past 3 years!


Walk to D'Feet ALS - Portland, Oregon  Sunday September 9th


NEW LOCATION:
    Eastbank Esplanade at the Main Street Plaza Sunday September 9th, 2007
 
    Boomer the Beaver as well as members of the Portland Timbers plan to be there!
    A special performance by the Portland Trailblazers Hip Hop JAM Squad will help energize all of our walkers!
    Izze Beverage Company will be handing out samples of their delicious soda drinks!
    Ron Callan, Sports Director, for KPAM Radio will be our Master of Ceremony!
    Chris Zauner of Zauner Mobile Entertainment will be our live Walk DJ!
    We are happy to welcome back the Last Regiment Drum Corp who will be walking with us and setting the beat to d’feet!
    Clown’s Unlimited will be sending over some FUN professionals to walk amongst the crowd and make balloon sculptures!
    American Medical Response will be in attendance for safety precautions!  Check out the Walk banner hanging from their building just South of the Burnside Bridge at I-5!!!
    CARE Medical will be in attendance with wheelchairs and walkers. Please contact Rebecca Nole at 503-238-5559 to reserve one for the day of the walk!

I hope to see some of you next Sunday.  Thank you everyone who responded to my first attempt at blogging.  I truly appreciate all of your warm, kind comments.

Warmest Regards
Laurie

Wed, Aug. 15th, 2007, 09:56 pm
From Colin's wife, Laurie -- upcoming ALS Walk to D'Feet

Dear Friends of Colin:
It has been 6 months since Colin passed away and I am not sure how many of you still have Colin in your friends list.  However, I hope a few of you remain connected since I want to tell you how much you all meant to Colin and me during the brief time he kept his blog.   You were his link to the larger world outside of his room.  Your on-going discussions provided the mental stimulation that he craved and when you asked him for advice, it made him happy that he could be helpful.  I would love to be able to thank each and every one of you individually but I was never able to keep track of how many people were on his Friends list.  So please know that I truly appreciate all of your kindness and support, even after he passed away.

I know several of you sent donations to the ALS Association -- thank you so very much!    And now I hope to continue some of Colin's efforts to work for a cure for this horrendous disease.  On Sun Sept 9th, the Oregon chapter of the ALS Association is holding its annual Walk to D'Feet fundraiser.  Like Colin did  the past two years, I am leading a team of walkers.  There is a new location for the walk this year.  It will at the East Side Esplanade and from some of the early info that I have received, it sounds like it is going to be even better than ever.  I will pass on the details as I get them but in the meantime, I hope you will "save the date" and if you are in the Portland area, join us for a fun event.

Thank you again, dear Friends.  

Laurie

Tue, Feb. 20th, 2007, 05:27 pm
A memorial service to remember

Dear Friends of Colin,

A memorial service was held in celebration of the Colin's life yesterday, at 1:00pm on Monday, February 19th.  Over 200 people attended the service, held in Portland, Oregon.  It was a beautiful service, presided over by Rabbi Annette Koch of the South Metro Jewish Congregation.   Several family members and friends spoke some very nice words about Colin, reminiscing about his life, and celebrating the life's work and actions of a man we loved and knew so well.  A video presentation celebrated Colin's life in pictures and music.

For those who want to see the video presentation, it is available on YouTube at:
http://www.youtube.com/watch?v=qe6lEft3t9Y

Many people from many social and occupational circles attended the memorial, and it was amazing to see the diversity of backgrounds in the room.  Our family thanks everyone who was able to be there in person, and everyone who could not attend, but has kept us in their thoughts.  We greatly appreciate your support and love.

For anyone who wants to contribute in Colin's memory, there are multiple ways to do so.  Colin's Blend coffee is available from K & F Coffee for purchase online by clicking here.  Colin's Blend was created by Colin, and 40% of sales are donated directly to the ALS Association of Oregon and SW Washington.  It's really good coffee, and was served at the reception following the memorial service.

Donations in Colin's name may also be made directly to the ALS Association of Oregon and SW Washington.  They can be found online at http://www.alsa-or.org, or by mail at:

The ALS Association of Oregon & SW Washington

310 SW Fourth Avenue
Suite 630
Portland, OR 97204


Phone:
503-238-5559
800-681-9851 (toll free) 


 

Thanks,

Cory Portnuff   -  

coryp

 

(Colin's son)

Tue, Feb. 13th, 2007, 07:22 pm
A memorial

Dear Friends of Colin,

As you all (hopefully) know, Colin passed away on February 11, 2007.  The following is information for the memorial service.

A memorial service and reception will be held on Monday, February 19th at 1:00pm.  The service will be at Holman's Funeral Service, located at 2610 SE Hawthorne Blvd, Portland, OR  97214.  A map is avalable at http://www.holmansfuneralservice.com

The service will be a short service celebrating Colin's life, with a reception following.  Coffee will be served at the reception.

Our family would like to get an idea of how many people are coming to the service.  If you are planning on coming to the service, please send an email to cory.portnuff (at) gmail.com or telephone us and indicate how many people are coming in your party.

Thank you for your continued support, and all the wonderful thoughts that have been sent to us.  We appreciate it greatly.

All the best,
Cory Portnuff


P.S.  In lieu of flowers, our family requests that donations be made to the ALS Association of Oregon and SW Washington.  They can be reached at  

The ALS Association of Oregon & SW Washington

310 SW Fourth Avenue
Suite 630
Portland, OR 97204

Phone:
503-238-5559
800-681-9851 (toll free)

Sun, Feb. 11th, 2007, 09:41 pm

Friends of  Colin,

Colin Portnuff passed away peacefully at 6:35pm this evening, due to complications from ALS.  Though his passing was somewhat sudden, Colin was surrounded by his family and close friends at the time of his death.  A memorial service will be held soon, with a tentative date being February 19, in Portland, Oregon.

In lieu of flowers, donations to the ALS Assocation of Oregon and SW Washington would be appreciated. 

As we are not in posession of Colin's LJ login information, this journal will be closed shortly.  If you want updates about the memorial service, please monitor Colin's son's LJ at coryp, or email him at  cory [dot] portnuff (at) gmail.com. 


Thank you,

Cory Portnuff
(Colin's son)

Sat, Feb. 10th, 2007, 09:10 am

 Hi y`all.  The great PC saga continues. No sign yet of the new motherboard, but I now have tree batteries and my external charger is able to keep me going as long as I have someone to swap for me. I will try to update later today -no time now.

OK. Back from Torah study now. With time to write.This has been a challenging week. Shortness of breath combined with very little sleep knocked me for a loop. Add the virus for a couple of days of diahrrea and an infected PEG tube site.completed the picture.

Went to the ALS clinic on Monday.ahead of schedule because of all these issue pilng up. So, current status:

nif is 15, down from twenty last time. Forced vital capacity is unmeasurable.

The discussion is turning to keeping me comfortable rather than effective .To that end.' we have added lorazepam and morphine. The lorazepam takes away the sensation of air hunger and lets me be comfortable breathing shallowly, So far I am just taking a single dose of the morphine.at bedtime.

Speaking of bedtime. I now have a wonderful automatic air mattress that adjusts itself continuously to prevent pressure sores, I think it is fantastic.. Biggest challenge is managing saliva to grt going with bipap, and then getting a decent seal at the new,higher pressures

 Now if you will excuse me, I need a nap

Mon, Feb. 5th, 2007, 06:25 pm




 One of my presentqtiona is viewable here.

Battry dying soo,so enjoy the talk qnd             I WILL UPDATE LATER.

Yes, it died so here goes.' ALS clinic Yesterday was useful for the first time we talked about treatment for comfort rather than maintaining function. Trying lorazepam and morphine to ease distress over respiratory weakness. We are going to try some differen settings on bipap.
Had a decent night sleep last night, but a lot of  catnapping going on today.

Trying a new chairback, which is giving me total freedom from pain for the first time in months.

Tracheostomy Ventilation was discussed. I am not planning on it due to thE need for 24 hpor supervision which Could stretch my care group's commitment bryond the pale and get very expensive very fast.

Have antibiotics for peG SITE. NOT CONVINVCED, BUT II'L TRY IT.


THATS ALL FOR NOW.LOTS OF ODDS AND ENDS TO TAKE CARE OF.

MOTHERBOARD IS BACKORDERED TIL 28TH. ORDERED THREE BATTERRIES FOR THURSDAY DELIVREY YHAT SHOULD RESTORE ME RO MORE OR LESS F]ULL FUNCTION.

Thu, Feb. 1st, 2007, 07:28 am

Very limited computer time. The laptop will not operate on a.c.power. Hoping for repair today.

Mon, Jan. 29th, 2007, 06:03 pm

OK, home again. belief is that the diarrhea is viral. I am home now and letting it run its course, will update later.

Mon, Jan. 29th, 2007, 01:26 pm

After yesterday and today's diahrrea and reduced nutrition, our family doc has advised me to go to the E.R. Concerned about electrolyte imbalance developing, so we are heading over now. probably no internet access there, so won't update for a while.

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