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!
Sunday, April 27, 2008
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.
Thursday, April 24, 2008
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!
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!
Wednesday, April 16, 2008
Tuesday, April 8, 2008
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.)
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.)
Tuesday, April 1, 2008
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!
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!
Thursday, March 27, 2008
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.
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.
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