colinportnuff

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

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

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)

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)

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)

 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

 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.

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

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

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.

It's been a rough 24 hours.

Had a wonderful visit yesterday with Carrie and Eric. Constance helped me with the morning and lunch, then Carrie took over. It was so great to see them. I got very cold for no apparent reason, and then later on, uncomfortably warm. Took my temperature and found a fever. I was very uncomfortable. After a couple of naproxin I felt much better.

 I took a dose of Milk of Magnesia to help with constipation. So this morning of course, I have diarrhea.  Cutting back on food today.

I have a ventilator on trial. Spent one night with it, but still had issues with fighting to exhale. at this point I am inclined to believe that my concern about the positive airway pressure on the bipap machine in exhale is misplaced. I went back to bipap last night, and did better. The problem seems to be me, not the machines. i may try adding in some exhale pressure on the vent to test this hypothesis.

Dozing off and waking short of breath is still disconcerting.

Not doing so well this week.

First the good news -- friends are organizing and the care group is working. I am no longer being left alone at home. Still need a few more people to fill in some gaps, but it's going well.

What is not going so well is me.

My respiratory status seems to be declining rapidly. Here is my current dilemma. I am getting about four hours of sleep a night. This is because of the duration of the drug effect of the hyocyamine. I get up about five, Laurie gets up at seven and gives me my morning meds.
 
During the day I get very sleepy. If I doze off I wake up soonafter, dizzy and short of breath. This is a frightening sensation. If I put on the bipap I fight to exhale, (which is odd since I can tolerate it better in bed). I also have to remove the mask to suction. The combination of fear, exhale issue,and secretions makes the essential catnaps impossible.

So I end up dozing off and  waking up in distress.

Today I tried something different. Got onto my bed, put on the bipap and slept for an hour and a half solid.from 5 pm That seemed to work better. Will see how the night goes.

Also annoying is the PEG tube site, inflamed and painful again just two days after I stopped daily cauterization. Back to the daily burn now.

Well, that's my whining for the day.

Brighten your day with this!

Just have a minute to recommend a movie. Everything is Illuminated.  A wonderful movie.

It's very pretty outside my window this morning-- about an inch of snow on the ground and more falling. The ground is cold, so it's all staying.

I haven't updated in a while, and I don't read my journal, so forgive any repetition or gaps. Laurie was gone for 5 days to a convention in Nashville. I had lots of help though, from friends for the first couple of days and nights, and then from my sister and brother-in-law for the weekend. Had a lovely time with all of my helpers.

I have been working on the care and feeding manual. It was good to watch a few people use it so I could identify needed improvements.

Had a very nice massage yesterday, after a bit of excitement trying to get myself onto the bed face down. That was unsuccessful, so I ended up back in the chair. It worked OK.

Then a couple of hours later I undid all the good. I fell in the bathroom. A full fall this time, ending up in the corner unable to move. We put our fall recovery training to work. Laurie did a great job helping me up. I am quite sore today from the battering I took in the fall. One big bruise on my butt and a bunch of sore muscles. A very potent reminder that I am not safe at home alone anymore. (and another section needed in the manual.)

My care group is gearing up for action now. Mostly for mornings so Laurie can get out, and one evening for her dance classes. This is terrific and hopefully will help us retain our sanity for a while longer.

My sleep periods are still abbreviated by drug effect duration. I get about 4 hours of sleep at night. Now I find myself dozing off, so I think I will sign off for now.

Well, a couple of exciting things to report today,

Ysterday I fell in a restroom at Best Buy. The floor was a pool of water on ceramic tile, like a sheet of ice. I fell so that i was suspended between the chair at my back and my left knee wedged against the urinal. Right leg extended, foot wedged against the wall to the right of the urinal. Knocked the laptop off the arm of the chair, and it sailed to the floor and into the adjacent stall.

I was totally unable to get up. Every time I pulled in my right leg in to try to use it for leverage it just slid back out. I was stuck for a couple of minutes. Fortunately Cory was there, and a guy who saw me fall went out and got him. Cory was able to get me up. Ended up a bit bruised and strained, but not seriously injured, and so far the laptop seems undamaged.

The second exciting thing has to do with why we were in Best Buy. It was the third stop in our shopping tour which culminated at Fry's with the purchase of a 40" 1080P LCD HDTV. If you don't know what that means, it means that I am sitting here slackjawed in amazement at how good the Ohio State Florida football game looks. For those interested, it is a Sony Bravia KDL-40V2500, and I absolutely love it. It is the most beautiful picture I have ever seen. Brilliant colors, exquisite detail, solid clean edges, no edge jitter, and perfect skin tones. It is the only set we saw that upconverts every source to its native 1080p resolution, and it has an internal QAM tuner so we get a few HD channels even now before we get the cable company's box on Wednesday.

There was a surprising $500 spread between highest and lowest at the four stores we visited. The highest price store would have matched the lowest (actually would have gone $125 lower) now that I think of it, but I feel better about buying from the store that didn't try to charge the highest price going in. The "we'll beat any price you can find" approach always seems a little unsavory to me.

It even opens up my room by letting me push the stand back against the wall.

In other news, Cory and Lindsay have gone back to Colorado and California respectively. Laurie is preparing for her trip Wednesday, and I am busy as always.

Those of you (probably most of you) who don't read my friends page might be interested to get to know my friend rickybuchanan

Haven't been posting as much lately -- partly due to being busy, partly due to it getting harder to type. But here's the news:

Gave up on the gucopyrrate (Robinul). The hope for it was that it would last longer than hyoscyamine, but it did not, so I am back to hyoscyamine.

Gummy gunk in my throat remains a problem. I can get it out sometimes with the cough assist machine and suction, but it requires luck and timing, and is often a messy and sometimes bloody operation. (Bloody from biting my tongue - my jaw clamps down and won't release.) If I am not fast enough to get my jaw to release and get the gunk out of my mouth, it can get sucked back in when I gasp for breath. Very frustrating.

I am getting about 4 hours of sleep a night. Results with bipap are spotty. Some nights it goes OK, some nights I can't use it. Without it I am short of breath, which makes sleep difficult.

I got a new neck brace yesterday,an Aspen collar, which seems considerably more comfortable.

My PEG tube site is still painful -- overgranulation is still there (growth of raw tissue). I am continuing the silver nitrate cauterization daily, and I know that it will work eventually, but it is a pain (literally).

I am trying out a new mounting system for my laptop, which works pretty well except that it traps me in the chair -- needs someone to remove it before I can get up. We are ordering one that will swing out of the way. The other drawback is that is adds some width to the chair.

Enough typing for now. I am doing OK.

The kids leave Sunday and Monday, and Laurie will be gone Wednesday through Sunday.

Oh, one more thing -- I've been invited back to PSU to speak to the AAC class next week and then in the spring. Should be interesting.

Off to Torah study then a physical therapy appointment.

Reae of my friends new year's greetings reminded me that I need to say something:

Happy New Year! Thank you for your love and friendship. You have enriched my life, and I appreciate you.


Best wishes for a safe, healthy and prosperous 2007! And to those of us that don't have good health and prosperity in the picture, comfort and ease in 2007.

Well, I can't say this has been the easiest year of my life.

The last few days in particular have been tough, getting stabilized on new food and medications. It has taken a lot of energy. On top of the constipation (now under control i think) and secretion management (not yet under control), my PEG tube site is doing its periodic overgranulation/inflammation act, which is very painful. I have been cauterizing with silver nitrate for three days now, but it takes about a week to get it under control usually, so I am still on the upslope.

I've added more fiber to my diet, in the form of benefiber, and prune juice once a day. I think that is working, but time will tell.

Still titrating the glucopyrrate, now up to two tablets three times a day.

Between the exhaustion from limited sleep and the pain, I have been dozing off a lot during the day. I am hoping that comes to an end as I get accustomed to the new drugs.

A few friends coming  for game night new years eve. I hope to be awake. I think i have slept enough today. I expect this to be the last new years eve I see, but one never knows.

Happy New Year! I hope the new year brings you health and prosperity, or at least a measure of comfort.