Brian Hackney

2008-08-17T11:19:00.000-07:00

I have struggled for several hours to find the words to write this entry. Brian ended his journey on Friday August 15 at 9:50 P.M. He fought a courageous battle, one filled with grace, love, laughter and dignity. Brian will continue to live in all our lives. He has touched a community that will forever be changed. The outpouring of support and love by our family and friends is a testament to the way Brian lived his life. Always a kind word, gentle in his manner, a helping hand, a quick smile and loyal to all his friends.

The girls and I want to thank everyone for all their thoughts, prayers and support over the last two years. It has made a difficult journey easier know we had a community behind us.

On Thursday August 21, we are having a Celebration of Life open house at our house from 4-7 p.m. We would like to invite all of you to come.

I say good-bye to my best friend and love of my life. But rest in the knowledge he is with us in spirit and watching over us.

Thank you all again for your love and support.

Julie, Megan and Paige

2008-08-14T14:16:00.000-07:00

Over the last few weeks Brian and I have taken several wonderful drives. We finally made it to Astoria, where we drove up to the Astoria Column and enjoyed the beautiful view. With my friend Kelly, we drove to Detroit Lake. It was a sunny and warm day. Kelly and I chatted and Brian smiled listening to all the stories. This week found us on Highway 99 driving through beautiful Amity and the surrounding area. We ended up taking Highway 47 through Carlton, Gaston and some other tiny towns to Forest Grove. I got the great idea to take Highway 8 to Banks thinking it would be a short cut. Next time I will consult the Thomas guide I had left on the kitchen counter. We drove about 40 minutes out of the way and West of Banks. It was all farmland, so we enjoyed the cows, wheat fields and farm equipment on the road. We tried making it to the Siletz River again but had to turn around because we ran out of time. We left a little later than we had hoped and made it to Corvallis, where we decided we could not make the trip in the time we had allotted. The Mackenzie River is still on our radar screen but we have yet to try. I feel comfortable with a 6-hour drive but the Siletz and Mackenzie are closer to 9 or 10 hours. Last August, when we purchased the van it had 11,191 miles on it, today it has 24,896 miles. The family who owned the van before us purchased it in 2002 brand new. In less than a year we have more than doubled the miles. I have to say Brian and I like to be on the go.

The first Saturday in August was a big day for Brian. His Neurologist Dr. Goslin made a house call. He was very excited. She spent about an hour here talking with Brian, checking on his vitals and answering questions. It was really nice of her to come to us. Going to the doctor’s office is hard both physically and emotionally.

The communication device is working wonderfully. Brian is using it all day and it is great to be able to understand him. So far, no hard drive problems, scanning issues or blips.

Our third hospice nurse is very nice. Hospice is a wonderful program. The Chaplain visits every week, the nurse calls on a regular basis and visits every week and the social worker is available anytime and visits often. We feel supported and cared for during this difficult time.

Not much to report on Brian’s current status. Just about the same since the last journal entry.

Today the sun is shining and it is hot. We have the air conditioning on and Brian is under an electric blanket. He is always cold but the girls and I are sweating. We came up with a compromise and it seems to be working.

Thank you, to everyone for your love and support. We feel the prayers and happy thoughts that come our way.

2008-07-28T19:44:00.000-07:00

Friday the 25th Brian and I celebrated 21 years of marriage. It was a quiet day, spent taking a drive, enjoying the sunshine, each other and our girls. The years have gone by fast. I have been going through old photo albums and it is amazing how we have changed.
Last week a couple of friends rented a DVD from the 1960’s shows Dark Shadow, Twlight Zone and Paladin. The acting was old fashioned and hokey but we had a great time watching them. Everyone sat around and talked about how old they were, why they loved the show and their favorite character.
Tuesday, we are taking a drive to the Mckenzie River outside of Eugene. We wanted to go in the winter but the roads were closed. This is river Brian loves and has wanted to revisit for a long time. It will be quite a journey for us. Will take about 6-7 hours. I am taking all the ventilator batteries, plus food and medicine. It will be worth the effort.
We are taking the girls on a drive this weekend to the Siletz River. This is a river we visited in the spring but could not get to the rapid Brian wanted to see. The road is open on the weekends so we are going to try again.
Brian’s health is the same. Not much happening, he seems to be in a stable period at the moment. We are getting our third Hospice nurse this week. Apparently the nurse we had was just a fill in until our nurse returned from vacation. We have really enjoyed our nurse and look forward to meeting our next nurse.
Brian continues to enjoy his communication device. He has quite a sense of humor and loves showing off. He also is able to tell me how he feels, what I need to tell the doctors, therapists and other health personnel. It is wonderful when it works.
While Diane was visiting we went to a beautiful lavender farm. The lavender was in full bloom with lots of bees flying around. The view was spectacular. Mt. Hood in the distance and the valley below. We are lucky to live in Oregon.
Monday, we started out going to Astoria. We drove as far as Columbia City to find out the road was closed due to a brush fire. We turned around and found a very curvy road to Vernonia. I was completely stressed out because it was an old poorly paved highway and Brian’s neck was bobbing all over the place. I hold onto the brace but I could not give him much comfort because of the road. We had to pull over several times to let log truck go by. We both agree it was a beautiful once we got home and relaxed a few minutes.

2008-07-18T13:21:00.000-07:00

Technology can be a wonderful thing or a big pain in the #*!@. Two weeks ago Brian’s hard drive on the NEW communication device died. We sent it back to the manufacturer to be fixed and waited impatiently for its return. It is difficult to express the frustration, stress, anxiety, and sadness our family went through. Brian has lost the ability to talk. We use an eye gaze chart and try to read his lips. After experiencing the benefit of the device it was devastating to go back. Lots of tears, a decline in Brian’s mental health, and friends finding it hard to come over. In a word AWFUL. When the UPS man came to the door with the repaired device I thought I would kiss him. He was embarrassed and rather cute about the whole thing. Again, we worked our way through the set up and found out we could not make the device scan. Once again our hero Tandy came to the rescue and fixed the problem. Brian has spent the entire day playing with the device, loving every minute and smiling for the first time in days. It is nice to have Brian back!!

Last weekend our friend Brian Connolly took us to the Portland Historic Races. We spent the better part of a day driving Brian’s wheelchair around the paddock, looking at cars, people and watching warm-up laps. We had a great day! You have to love the smell of gasoline, the thump, thump, thump of an engine and the sweltering heat that radiates off the asphalt. Brian was all smiles. Thank you, Brian C.

Hospice has been a nice addition to our family. We are thoroughly enjoying the Chaplain. She is bringing books, articles, and PODCASTS for Brian to read and listen to. She is calm, well read and challenges Brian in his thinking. Our nurse is wonderful. She comes once a week, to check in, help me problem solve, and remind me we are doing a good job. I wasn’t sure about hospice, but I am relieved and happy we have it.

We continue to take drives; last week we explored the Keizer area near Salem. Beautiful countryside. My driving can be called hazardous. I drive with my right hand on Brian’s neck brace to help support his head, one hand on the wheel and usually one eye on Brian and one on the road. We have learned I need to pull over whenever he talks because I am going to cause an accident.

Brian’s health is gradually getting worse. He is on his vent most of the day; we have increased the pressure support to help give him more air. He has used his nighttime mask during the day. His back muscles are gone. He tires easily and takes several naps during the day. He was sleeping in his bed the last two weeks but has started sleeping in his wheelchair. I am not sure if the wheelchair is to help the pain or me. His hoyer transfers have become a two-person transfer but we are making due with just me for now. I think Brian is concerned and is trying to make things easier for me. He still laughs at the girls and I, makes funny comments on his device and looks at us with wonderful green eyes that say, “I love you”.

Diane is here visiting for the week. It is wonderful to have her. She is cooking, doing laundry, helping with Brian, enjoying her nieces and giving me support and friendship I need because I question my ability all the time.

Thank you Teri for all your help!
My last thoughts for this entry: Remember, this life is not a dress rehearsal. Live each day to the fullest.

A solemn thought: this is no way to live or to die.

2008-06-28T15:31:00.000-07:00

Hospice, communication device and thoughts

On June 23 we officially became a part of the Providence Hospice program. We have met with an intake nurse, our assigned nurse, our social worker and the chaplain. Everyone is wonderful. The nurse will come by the house twice a week to start with just to get a feel for Brian and check on his medication. The social worker has provided phone numbers to different home health agencies. We are not ready to hire anyone or bring additional people into the home. Hospice provides counseling for the family during the illness as well as bereavement. I am going to meet with a counselor who specializes in counseling children. Both girls are not interested in counseling at this time but I could use some suggestions to make it better for all of us. Brian and the chaplain are going to continue their discussions next week. She is wonderful. I have to admit I feel some relief with Hospice. The main reason is when Brian ends his journey here on Earth, it is an easy phone call to Hospice and they make the call to the funeral home. As a family we avoid the police, an investigation into the cause of death, the medical examiner and who else might become involved. It will already be hard enough without extra people asking questions.

The communication device came a week ago. At first we were disappointed, it did not perform the way we had thought it would. Brian has spent hours and hours programming the device. The saying around here is Brian looks at a computer problem and thinks, “Oh, boy a problem, lets fix it” I look at the computer and all the problems and say “lets get rid of it!!!” Our friend Tandy came over and got the scanning working and the switch access where it needed to be. Thank goodness for Tandy!! The best part of the device is the time Brian has spent on it. Since he lost the PC he has had a hard time filling his time. The machine has replaced the PC and given him new challenges. Some of our favorite sayings “Are you listening to me?” “Do not interrupt me when I am talking” “Are you talking to me?” and my favorite “I love you”. Brian lost the ability to use his voice last week. It has been very frustrating trying to talk or understand what he needs. Even with all three of us listening to his whispers we often cannot make out what he is saying. He has programmed the device to assist us all. Plus it is nice to hear Brian’s humor once more. He is a funny guy.

Brian has faced this disease with grace, a positive attitude and a no bad day motto. I have to say it has not been easy. We have good and bad days. I admire Brian everyday with his positive outlook, his smile and his eyes. They help me get through most days. I find I am the one who gets frustrated; his neurologist told us the other day- Life should not be so hard. Boy, is that an understatement. It breaks my heart to see what this disease can do to a human body. I am thankful everyday Brian sees the positive things in life. He is amazing.

We continue to take drives, see friends, laugh out loud at the silly things, smile, cry, enjoy our family and love each other. Until next time-hugs to you all.

2008-06-18T16:52:00.000-07:00

My first journal entry

It seems odd to be writing in Brian’s journal. However, it is necessary for me to take over the task. Brian’s ability to communicate is gone. We have disconnected his cell phone, I answer all his emails with his ever-present gaze at what I am saying, and the girls and I are the only ones who can understand him when he speaks. This has caused much frustration and what we call communication break down. Amazingly, he has kept his spirits high, always has a smile, and has his wit about him.

On May 12th we went to our last ALS clinic. After much discussion and thought our Neurologist suggested and we agreed to only see her in the future. The disease has progressed past the point of seeing the physical therapist, occupational therapist, speech pathologist, nutritionist, respiratory therapist and social worker. We will see Dr. Goslin and handle any medical needs through her and her staff.

By the end of the week, we will be part of the Hospice program. In May Brian’s breathing had deteriorated to the point where they did not test him. The Pulmonologist thought it was some where between 10-15% of normal. Down from 24% in March. We have mixed emotions about this new stage in our lives. We are scared, sad, numb but also hopeful they will be able to help Brian be more comfortable. At the moment he has to sleep in his wheelchair because of severe back pain. The wheelchair has more adjustments than the hospital bed so we can make him changes to his position quicker and easier. He is on his ventilator about 22-23 hours a day. The vent-as we call it, it attached to the back of his chair to make moving around easier. Yesterday, his communication device arrived. We spent several hours today trying to make the device work. The easy step-by-step instructions and on-line help aids are frustrating. We both agree it would be easier if Brian did not have to rely on me to work it. I am not much for computers or figuring out new systems. The device will be attached to his chair so he will be able to use it all the time.

Over the last month, we had some wonderful visits from Brian’s sister, brother and mom. It was great to see them. We will treasure those visits always.

Recently a very dear friend was reminded by our situation that this life is the real thing. It is not a rehearsal. This is the most important lesson you can get from our journey.

2008-05-21T14:07:00.000-07:00

Journal Entry 23

Clinic, Old River Ramble

Monday a week ago Julie and I went to our last clinic. The news wasn’t really that bad because we went with low expectations. At the end of the day we agreed to meet with the neurologist every six weeks, and with other specialists as needed.

In particular, we are working with the augmentative communications guy to get a special device that will talk for me. That should take about a month. (I can no longer talk and I can only whisper for a few hours in the morning. The family does reasonably well with lip reading but the process is tedious and unsatisfactory.) After the equipment arrives I will probably go into Hospice care. I qualify for Medicare on June 1st.

This Saturday was the Old River Ramble, a 10K, 5K or 1 mile event that began and ended on the grounds of Cedaroak Primary School. Julie guided my wheelchair while my sister Diane and sister-in-law Teri pulled my breathing equipment in a wagon to get me through the 1 mile walk. Race fans cheered me on the last hundred yards to the finish line! I saw people I have not seen in a couple of years. It was a lot of family fun.

This week, Julie, Diane, and I went to the Crystal Springs Rhododendron Gardens. Lightly visited this day, the gardens were a peaceful way to spend the last day of glorious sunshine this week.

I am dictating this journal entry through my sister, Diane. As noted above, my ability to communicate is about nil. My journal entries will appear very infrequently from now on.

2008-05-08T11:57:00.000-07:00

Journal Entry 22

There have been a couple of equipment changes since my last entry. On Friday, chin controls were added to the wheelchair. I can drive the chair and change tilt positions using a toggle switch under my chin. I haven’t played with this much. I don’t think I will be able to drive very far, but it will be fine for short distances. I am looking forward to the ability to change the chair’s tilt without asking for help.

After having difficulty with the Bi-PAP machine, that was exchanged for a ventilator. The flexibility of the vent works better for me. I use a full face mask that I wear every night when using the vent. Communication is difficult, but I am able to sleep through the night for the first time in weeks.

My voice is about gone. I had been making and taking phone calls through my computer using Skype. While I have not turned off the account, I have changed my voice mail greeting directing callers to use our home phone number. I no longer answer calls or listen to voice mail.

Julie is typing this journal entry for me. The voice recognition software no longer works, and my neck muscles are not strong enough to type with the on screen keyboard. There will be fewer journal entries moving forward.

I am finding that smelling food that I can't eat is the worst part of being fed through a tube. Pizza is the biggest offender!

My next major events are a visit from my sister and her husband next week, followed by the Old River Ramble next weekend. (I’ll see you at the one-mile walk!) My brother comes to visit at the end of the month.

Julie and I are taking drives in the country three or four days a week. Having her home to care for me has been wonderful!

2008-04-27T21:34:00.000-07:00

Journal Entry Twenty-one

Misc. Ramblings II

The photo above was taken at Delta Park where, once again, Megan’s team won the state rugby championship. (She’s rarely this clean after a match!)

My neurologist suggested that I no longer eat or drink orally. I’ve tasted my last hamburger, my last coffee. It’s difficult to sit at the table smelling an excellent meal while watching my formula dripping from a bag into my stomach.

Today Julie and I drove to Champoeg, Newberg, Yamhill, Gaston, and North Plains. We shared the roads with cyclists who enjoyed the beautiful day with us.

Due to loss of lung strength I can barely talk late in the day. Questions that deserve answers receive none. Questions that require answers might get a one-syllable reply, or maybe a vigorous nod.

2008-04-24T20:37:00.001-07:00

Journal Entry Twenty

Recovery from last week’s surgery has been slower than I’d anticipated. I’ve only had a few bites of solid food since last Wednesday. All else has been formula fed through a tube into the top of my stomach.

April 11was Julie’s last work-day for awhile. She’s going to stay home with her hubby. Since she has summers off she won’t work again until at least September.

Thanks to donors, table sponsor, players, and especially the white-shirted volunteers who made the Good Deeds poker tournament huge success! A great time was had by all at the West Linn Senior Center!

2008-04-16T10:11:00.000-07:00

Journal Entry Nineteen

Feeding Tube

Surgery today, takes ten minutes. I'm in the hospital into tomorrow.

2008-04-08T16:25:00.000-07:00

Journal Entry Eighteen

Email and Ensure

I am weeks behind with my email. You’d think a shut-in with a computer would have ample discretionary time to answer email, but I seem to have little time during the day. In the evening I’m generally too tired to write, so I spend my time on Wikipedia. I want to reply to all guest-book entries, but I won’t catch up soon.

This Wednesday Julie and I have a consultation with a surgeon. I probably will get a feeding tube inserted into my stomach wall in the next few weeks. For those who can no longer chew or swallow, supplements such as Ensure can be poured directly into the stomach. When patients become extremely weak this surgery can be dangerous, which is why I may move forward while I can still eat and don’t need the tube. (Despite my nutritionist’s expectations to the contrary, I have actually gained weight during the last year.)

2008-04-01T19:02:00.000-07:00

Journal Entry Seventeen

Spring Break

I’ve received a few questions about the Siletz River. It begins in the Coast Range with whitewater and rocks, and is wide and sedate when it enters the Pacific between Lincoln City and Salishan.

Julie and I canceled our plans to drive up the McKenzie River because of last week's crazy weather. Instead, we took a pretty drive east of I-5, from Canby, Woodburn, Silverton, and Scio, to Sweet Home.

I had never been to Scio. It's an attractive little town, well kept up, with pretty gingerbread houses.

For much of the drive we talked about the contrast between neat little farmhouses and their neighbors, who invariably had mobile homes surrounded by piles of rusted cars and garbage.

Toward the end of the week, in addition to appointments with my physical therapist and my occupational therapist, I got a bipap machine. The bipap doesn't breathe for me, but through a mask, supplies extra air at night. It has been compared to sticking your head out the window of your car at 70 miles an hour, and trying to breathe. Fortunately, it only took four or five days for me to get used to it. I wasn’t happy about getting the machine, but I now have to admit that the bipap is a milestone that helps me feel better instead of worse!

2008-03-27T18:54:00.000-07:00

Journal Entry Sixteen

Clinic

On Monday Julie and I went to the ALS Clinic at Providence. As we’d expected, it was not a good afternoon.

As I have mentioned before, the clinic at Providence involves meeting my neurologist, a nutritionist, physical therapist, occupational therapist, a speech therapist, respiratory technician, an augmentative communication specialist, and a social worker.

The two most important meetings are with my neurologist and with the respiratory technician.

The respiratory technician comes up with several measurements; the most important being forced vital capacity. (Other patients call the respiratory tech The Breathing Nazi because of the aggravation we go through to give lung capacity measurements.) In effect, the resulting numbers measure the progress of the disease. From December of 2006 to yesterday my forced vital capacity numbers (100 is normal) have been 105, 95, 75, 75, 63, and 24. A number as low as 24 means that I could die at any time.

Monday was our first visit with hospice, too. There’s no way to describe how we felt after that.

The neurologist had visited prior to the respiratory tech. She came in again after the end of the meetings. She told us that she did not believe that 24 was correct, as there had been some irregularities with the process used to measure my lung capacity. There are also some practical reasons to believe that the prognosis caused by the 24 is too severe: I still sleep at without discomfort and without the aid of machinery, I have no trouble swallowing, and my weight has stayed constant.

Julie and I agree in principle with neurologist but are still terribly shaken up.

We took a drive yesterday to the Siletz River. It was a beautiful day, and we enjoyed beautiful scenery.

For me, long drives together are part of saying good-bye.

2008-03-19T10:11:00.000-07:00

Journal Entry Fifteen

Misc. Ramblings.
(Googling “misc. ramblings” returned 3000 hits, mainly from blog entries.)

Another milestone -- as of this weekend, I no longer have the strength to drive my wheelchair.

My mom will be here for a week in April. Diane and Chuck, my sister and my brother-in-law, will be here in May.

My voice is about shot, but my voice recognition software still works better than typing one letter at a time using an on-screen keyboard. I have to leave my iPod turned off so the microphone and the software aren’t affected by the music.

Next week is spring break. Julie and I plan to take a couple of day-long drives to some places I/we haven’t seen in 15 years. I want to visit Siletz via Blodgett, Nashville, and Logsden. Roads permitting I’d like to see Sahalie Falls on the McKenzie River again.

Thank to gentle prodding from several of you I’m working on a “personal history” to leave to Megan and Paige.

Driving west from Springwater Road on Redland Road, just before Viola, is a roadside memorial. Above the small white cross, on a tree, is a much larger cross with “No Bad Days” printed vertically. I like to think this was the mantra of someone in a situation similar to mine. The words give cheer on those days that I’m not well.

Monday is my next visit to the ALS clinic. It’s a good system: Julie and I will see my neurologist, a nurse, nutritionist, speech therapist, respiratory technician, physical therapist, occupational therapist, and a couple others, all within four hours.

Again, I can't express how much your help – financial, emotional, and otherwise – means to my family and to me. Thank you.

2008-03-12T09:34:00.000-07:00

Journal Entry Fourteen

World's Foremost Outfitter

Last Friday Julie, Jeff and Toni Laster, and I drove the two hours from Portland to Lacey. Jeff even took a day of vacation, because we were going to Cabela's!

With 25 stores in the United States and a huge mail order business, Cabela's is the best known hunting and fishing retailer in the country. The new store in Lacey has 185,000 square feet.

This store sells fishing equipment, bass boats, ski boats, guns, camping gear, bicycles, canoes, home and cabin accessories, and all types of clothing. There is an aquarium, a restaurant, an escalator, and there are two elevators. Cabela's has a gun library of high-end firearms. The most expensive shotgun in Lacey is $8,000, but other stores have shotguns priced at $25,000. (Think of a fine shotgun as you would a collector's Ferrari. It is easy enough to spend over $70,000 on a British double barrel.)

Imagining Cabela's to be an IKEA for guys, Julie and Toni had planned to visit a nearby movie theater. It is a tribute to the prices and selections that they never left. And, Jeff and I later agreed that we had never before spent 4 1/2 hours in a store!

Between us, we purchased clothing, a cot, gifts, and for me -- a bag of Atomic Fireballs!

2008-03-10T11:32:00.000-07:00

Journal Entry Thirteen

On Death and Dying

In Elisabeth Kubler-Ross' 1969 book she enumerates five stages of grief. They are denial, anger, bargaining, depression, and acceptance.

There is much discussion about whether there is an order to these five stages, and whether all five impact everyone. There is, however, a general acceptance of the list itself.

I continually feel denial, anger, depression, and acceptance, depending on my mood. Bargaining is when one appeals to God, luck, or doctors to be allowed to survive. It may also be a time when some of us experiment with alternative means of treatment. (A quick web search will identify many opportunities for terminal patients to be separated from their money. Most are ridiculously expensive and, well, ridiculous.)

I may attempt to bargain as my end draws nearer, but the bargaining will be within myself. Do I want invasive surgery and a machine that breathes for me to prolong my life until a particular event? It is too early to know whether that will come.

It may seem odd to experience denial and acceptance at the same time, but I accept my impending death at the same time that I still -- even after two years -- believe this can't be happening to me. In my dreams each night I still walk. In my dreams each day I still walk.

I imagine that any remaining denial will disappear as my departure becomes more imminent.

I never really pinned down at whom or what I was angry.

Depression? That awful all –consuming demon attacks often, leaving me crying in Julie's arms.

2008-03-04T19:47:00.000-08:00

Journal Entry Twelve

Cheer, Cheer for Cedaroak…

So goes the first line of the school song at Cedaroak Park Primary School. Megan and Paige each spent six years there. Julie has been on Site Council, and works at Cedaroak. Julie and I have been parent volunteers, and have chaperoned field trips. We've graded papers, organized events, been to Fun Night, Field Day, Ice Cream socials, musicals and plays, and Bingo Night. We’ve supported Cedaroak students, buying Girl Scout cookies and Campfire candy, eaten at Cub Scout breakfasts, and bought gift-wrap. (If you had children you've done those same things!)

That said, today I finally understand the sense of community at Cedaroak, created and nurtured by the students, teachers, parents, and staff.

Teachers who are caring, kids who practice sharing…

For several years Cheri Weaver’s class of fourth and fifth graders at Cedaroak has sold valentine lollipops the week of February 14th, and has donated the proceeds within our community. This year The Hackney Fund was the recipient of the donation.

This event succeeds because it’s for a good cause each year that the kids can get behind, because everyone likes to give and receive valentines, and because lollipops taste good!

Let’s hear it for Cedaroak!

Lyrics by Mel and Elaine Ball.

2008-02-26T08:22:00.000-08:00

Journal Entry Eleven

At the Track

Portland International Raceway held a reopening ribbon cutting ceremony last weekend. Several hundred people attended. The track has been repaved and slightly redesigned. Brian Connolly made arrangements for us to get VIP treatment at the track. Jason Steele went too.

After watching the ceremonies we took four laps around the 1.9 mile track.

On the first lap I was going so fast down the front straight that I couldn't turn at the chicane and went on through. I bounced off rumble strips at the turns, trying for a late apex to get maximum speed down the track. I hit fifth gear on the back straight before heading for the pits at Turn 9.

After driving that hot lap in my wheelchair, I waited for Jason and Brian and we took the next three laps in the van.

Brian found the event organizer, who put us behind the pace car and in front of the several hundred other cars already lined up to take parade laps. As usual, I rode shotgun, which left Jason bouncing around in back while Brian drove like Mario Andretti around the track. Our average speed for the three laps was at least 40 mph!

Then, on to Li'l Cooperstown to debrief.

2008-02-21T09:09:00.000-08:00

Journal Entry Ten

New equipment

Wow! Two journal entries on the same day!

On Friday, February 15, I got a hospital bed. The mattress isn't as comfortable as I would like, but the adjustable features of the bed more than make up for that. The main downside is that the bed is so narrow I have to sleep on my back.

Yesterday I got a shower chair. (In the interests of decency on the Internet, I regret that I cannot show a photo of how it works.) As well as making showers easier, the new chair cuts down on the number of times that Julie has to lift me, reducing chances that we will get hurt.

2008-02-21T08:58:00.001-08:00

Journal Entry Nine

Air Hunger in the Wee Hours of the Morning...

I had awakened breathing normally, but unable to take a deep, lung filling breath. After a few minutes of this I began to panic. I’d had a couple of these spells earlier in the week, and thought that I had eliminated the problems through changes in medication

So, Julie, Megan, and I spent four hours in the hospital at OHSU Saturday. The four Tualatin Valley paramedics and the two ambulance paramedics standing are around my bed at 1:30 a.m. had been very efficient, determining that my oxygen and carbon dioxide levels were good, my heart rate and blood pressure were good, and my chest was clear. We decided that I should go to the hospital anyway.

This was my second ambulance ride since getting sick. I am happy to say that neither trip required flashing lights or sirens.

The doctors at OHSU agreed with the paramedics. Nothing really was wrong with me medically. After I calmed down my breathing returned to normal, I was released.

Later, my neurologist told me that I had experienced air hunger. While not serious, it is scary, and it is not rare in ALS patients. She added one more medication to my arsenal, hopefully to eliminate the panic if the problem crops up again.

Just another day in the life . . .!

2008-02-11T15:14:00.000-08:00

Journal Entry Eight

Old Friends become New Friends

I wrote an overview of my road trip in Journal Entry Six. I went to California, museum--hopping with two college roommates from the mid-1970s. I want to share some of what made this journey so special.

In fact, Carlos was a last minute addition to our trip. It was a good thing that he crashed the party because Steve and I had grossly underestimated the amount of work necessary and the safety issues involved with taking care of me.

As you know, Julie has taken care of my bathrooming needs and has fed me for several months. She is the only person who has fed me in public, at a restaurant. (I have to admit that we ate in Sherwood to reduce the likelihood of seeing someone I knew!)

All of this had to change on our trip to California.

I was a bit concerned on an emotional level, but figured it would work out alright. Steve and Carlos fed me from Wendy's to Red Lobster and everywhere in between. They took me to the bathroom in restaurants and in rest areas. Bathrooming in our hotels included shaving and brushing my teeth as well as using the toilet and taking a shower. (We agreed that there would be no anatomical jokes unless absolutely necessary.) Steve and Carlos were a great tag team.I couldn't have hoped for a better trip.

I did succeed in training them to bring me coffee in the shower!

Thanks, guys.

2008-02-08T08:20:00.000-08:00

Journal Entry Seven

Progression

The disease seems to be moving faster now. Between the beginning and the end of my California road trip (see previous post) there was noticeable deterioration in my left arm and in my ability to speak.

If you and I have talked in the last month or two you probably noticed changes in my speech. At that time these changes were caused by weakness in my lungs. Now, there is no ignoring the fact that muscle deterioration is impacting my pronunciation. Fatigue makes talking later in the day difficult and very deliberate.

Between the end of January and the first of February I began losing ability to control my wheelchair. There are options to use different controls that let me change body position in the chair, but I don't think I can drive with the new controls.

As the disease moves from stage to stage the techniques and tools change, of necessity. In the beginning a hand brace and moving the mouse to the left side of the keyboard were clever ideas. Later, I began using augmentative software, and needed a leg brace and a cane to stand. For several months I have used a power wheelchair and have been hands -- free on my computer. Now I am approaching the next level -- whatever that means.

As usual, I am using voice recognition software to write in this journal entry. It is 8:10 a.m. and I am exhausted from the effort.

2008-02-02T15:27:00.000-08:00

Journal Entry Six

ROAD TRIP!

On Saturday the 25th, I left with two college roommates, Steve and Carlos, on a trip to California. Our plan was to drive from Portland to Palm Springs, visiting as many museums as possible along the way.

In the Sacramento area we went to a rail museum, a military museum, a car museum, a local historical museum, and an Air Force museum. From there we drove to an air museum in Merced, and a naval weapons museum in China Lake. On our last spectating day we visited World War II air museums in Palm Springs and in Chino.

Because of bad weather we chose to drive home on Highway 101 instead of I-5. We drove from Marin County to Florence, then turned east to Eugene. A high point was seeing a sperm whale that had washed up on the beach at Crescent City. We covered 2400 miles in seven days.

More to come...

2008-01-22T07:50:00.000-08:00

Journal Entry Five
A Sad Evening

Since beginning this journey in mid-2006 I have tended to look at my life with ALS in terms of milestones. When I stopped driving, when I stopped working, when I moved full time into a wheelchair, etc, were moments to put off as long as possible. Friday night was another big one.

A Hoyer lift is nothing more than a chromed engine hoist. Instead of using chains to pull that small-block Chevy out of the engine bay, the Hoyer uses a sling to move me from chair to toilet to bed.

While we had practiced several times, Friday night the 18th was the first Hoyer transfer done of necessity. Megan and Paige helped move me from the bathroom to bed. Another significant acknowledgment of change and of progression. We've come full circle since the days when it was I who carried them.

Some days are better than others.

2008-01-16T13:18:00.000-08:00

Journal Entry Number Four

You many have read about the various symptoms of ALS, but I decided to cover them anyway. Here is a list:

Twitching
Muscle fatigue
Shortness of breath
Slurred words, difficulty speaking
Low volume when talking
Uncontrollable laughing or crying
Difficulty swallowing
Muscle spasms
Weakness in the limbs and in other muscles
Uncontrollable yawning
Coughing, and some gagging

Other than slurred words and difficulty speaking and swallowing, all of these apply to me.

The effects of the symptoms may seem obvious, such as mobility issues. Here are some problems that books and doctors don't tell you about:

Turning pages
Remote controls
Telephones
Scratching when I itch
Drinking everything through a straw
I can't rollover so I have to sleep on my back, or waken Julie to roll me over
Receiving hugs is pretty easy, but delivering is impossible.

Instead of worrying about dying from ALS, I am learning how to live with ALS.

2008-01-11T10:10:00.000-08:00

January 11, Journal Entry 3, -- Simple Pleasures

Getting coffee served in the shower while waiting for the water to heat up.

Being told to gain weight.

Learning that even bad cholesterol is good for me.

Driving my wheelchair through Target faster than anyone else can jog.

Front row seating at A Christmas Carol.

The BMW "M" badge on my wheelchair.

Hearing from people for the first time in 15 years.

Thank you.

2008-01-07T13:51:00.000-08:00

January 7, 2007 Journal Entry
Technology

I have enjoyed showing off my various hands-free systems to visitors, and thought this technology would be a good journal topic.

At this point I have very limited use of my left hand and no use at all of my right. However, with today's hardware and software that is not an insurmountable problem.

Dragon NaturallySpeaking voice recognition software types as I speak into a microphone. I also use an on-screen keyboard to type when Dragon NaturallySpeaking and I are not working well together! (I am writing this journal entry hands-free.)

I also have software that is the reverse of voice recognition software, speaking what I type.

Natural Point is a head mouse. A reflector on my baseball hat is read by a camera positioned on top of my computer screen. The cursor is controlled by head movement. This product includes the dwell clicking software. I right click, left click, drag, or double click with this software.

Skype is basically a telephone that uses my computer and the Internet. Skype has voicemail, and I have my cell phone forwarded to Skype. The same microphone that I use with Dragon NaturallySpeaking also works with Skype. I use the mouse to initiate and end phone calls.

The State of Oregon will supply telephones that are totally hands-free to disabled residents. If my landline phone rings the first noise I make answers the phone, and the speaker phone does the rest!

Finally, I have a remote control for my iPod!

Brian

2008-01-02T13:22:00.001-08:00

On January 2, 2008. My first journal entry. And, my first, and perhaps best, chance to thank all of the people who have helped my family through the difficult process of dealing with ALS.

ALS is a terribly expensive disease that also demands tremendous effort and time from the primary caregiver -- in this case, Julie.

The support group that organized to relieve to Julie and take care of our family has provided meals, worked on projects around our home, and truly made the Christmas of 2007 a memorable one.

There's no way that we can express our thanks to you individually, so please accept this note as our heartfelt thanks.

Brian