Our friend, Dawn, is on the tv show Survivor!
It airs Wednesday nights on CBS @ 7pm tonight is episode 3.
Go Dawn! We are cheering for you!
Her blog is fun/funny/inspiring. Check it out:
Wednesday, September 28, 2011
Monday, September 26, 2011
The good with the bad and ugly – it’s a package deal.
Let’s start with the ugly.
For those who may not know, I was diagnosed with als (aka. Lou Gehrig’s Disease) in June 2008. Previous to that I was a healthy and physically active individual.
Amyotrophic lateral sclerosis (ALS is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control voluntary muscles like the diaphragm, chewing, swallowing, speaking, arm and leg movement etc. Associated with the loss functioning motor neurons in ALS, is that various muscles cells waste away (atrophy), resulting in increased muscle weakness and eventual paralysis.
Upper body: Very weak. I have not washed my own hair in over a year. I now have 12 inch dreadlocks which aren’t so bad. Just kidding (only about the dreadlocks part). There are friends that come over and wash it in the kitchen sink for me. I cannot change my shirt or put on a coat by myself. I have not been able to drive a car since early January 2011.
Hands: Fingers are starting to curl. I try to straighten them out as much as possible on my own. At one point I had some custom braces made which I planned on wearing at night. They were uncomfortable and I felt like my hands were flippers. While wearing them it was impossible to brush hair out of my face or pull up my covers.
Breathing: My respiratory function is at 94. This is great and better than some ‘healthy’ people. But a nasty cold virus did result in me not being able to breath and I did have an ER visit.
Eating: I can feed myself and chew and swallow. The difficulty lies in lifting the food to my mouth; it is an awkward and tiring process. For that reason Dr. Bromberg wants me to get a food tube. He refers to it as a ‘tool.’ I could still continue to eat normally but if I was too tired to eat I could pour in a can of calories and nutrients to sustain me. Appetizing! Not really!! I’m not ready for that yet. But I would like to gain weight.
Speaking: Due to atrophy in my tongue my speech is slow, some words are difficult to enunciate and my voice is starting to sound different.
Lower body: I can walk, but in the house I use a walker for stability. In the neighborhood you will see me pushing around that stupid stroller. There has been enough tripping and falling that it is much safer this way. We went on a few longer outings this summer as a family where I knew that if I was going to be involved I would need to be in a wheelchair. So I rode.
Consider this as just an update. I'm not looking for pity, or the sad smiles, or multi-level-marketing berry juices.
No thanks.
What I do look for is how a person handles the bad, ugly, or the challenging circumstances in their own life. Everyone has something. Everyone. I look around and am inspired by the strength, drive, ability to adapt, faith and peace of others.
--------------------------------------------------------------------------------------
For those who may not know, I was diagnosed with als (aka. Lou Gehrig’s Disease) in June 2008. Previous to that I was a healthy and physically active individual.
Amyotrophic lateral sclerosis (ALS is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control voluntary muscles like the diaphragm, chewing, swallowing, speaking, arm and leg movement etc. Associated with the loss functioning motor neurons in ALS, is that various muscles cells waste away (atrophy), resulting in increased muscle weakness and eventual paralysis.
Upper body: Very weak. I have not washed my own hair in over a year. I now have 12 inch dreadlocks which aren’t so bad. Just kidding (only about the dreadlocks part). There are friends that come over and wash it in the kitchen sink for me. I cannot change my shirt or put on a coat by myself. I have not been able to drive a car since early January 2011.
Hands: Fingers are starting to curl. I try to straighten them out as much as possible on my own. At one point I had some custom braces made which I planned on wearing at night. They were uncomfortable and I felt like my hands were flippers. While wearing them it was impossible to brush hair out of my face or pull up my covers.
Breathing: My respiratory function is at 94. This is great and better than some ‘healthy’ people. But a nasty cold virus did result in me not being able to breath and I did have an ER visit.
Eating: I can feed myself and chew and swallow. The difficulty lies in lifting the food to my mouth; it is an awkward and tiring process. For that reason Dr. Bromberg wants me to get a food tube. He refers to it as a ‘tool.’ I could still continue to eat normally but if I was too tired to eat I could pour in a can of calories and nutrients to sustain me. Appetizing! Not really!! I’m not ready for that yet. But I would like to gain weight.
Speaking: Due to atrophy in my tongue my speech is slow, some words are difficult to enunciate and my voice is starting to sound different.
Lower body: I can walk, but in the house I use a walker for stability. In the neighborhood you will see me pushing around that stupid stroller. There has been enough tripping and falling that it is much safer this way. We went on a few longer outings this summer as a family where I knew that if I was going to be involved I would need to be in a wheelchair. So I rode.
Consider this as just an update. I'm not looking for pity, or the sad smiles, or multi-level-marketing berry juices.
No thanks.
What I do look for is how a person handles the bad, ugly, or the challenging circumstances in their own life. Everyone has something. Everyone. I look around and am inspired by the strength, drive, ability to adapt, faith and peace of others.
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The good. @ the park (dreadlocks free) with Claire-bear.There is so much that is good and beautiful mixed in with the bad. It is a package deal.
My goal is to try to pause and and be present in the moment. There is the potential for a million little moments that make each day worth it.
Now that I have said it, the trick is to live it ;-)
Wednesday, August 17, 2011
Cecret Lake
I don't want to scare you but today is August 17.
Which means we are already over 1/2 through the month...
Which means we are fast approaching the end of summer...
Which means the last place I want to be is indoors in a dull climate controlled environment.
I want to enjoy the sun, sky, warm breezes, and the green as much as possible. Last week Jeff and I went on a mid-week date to see the wildflowers in Little Cottonwood Canyon. They were beau-ti-ful! They are going to be strong for the next week or two, and we will have to drive up again and bring Erik/Claire/Megan.
We didn't do the hike but it is a family friendly trail.
My boyfriend. For some reason his braces make me feel young too. (They come off in November.)
Just on the drive up I counted 15+ types of wildflowers from the car.
Which means we are already over 1/2 through the month...
Which means we are fast approaching the end of summer...
Which means the last place I want to be is indoors in a dull climate controlled environment.
I want to enjoy the sun, sky, warm breezes, and the green as much as possible. Last week Jeff and I went on a mid-week date to see the wildflowers in Little Cottonwood Canyon. They were beau-ti-ful! They are going to be strong for the next week or two, and we will have to drive up again and bring Erik/Claire/Megan.
We didn't do the hike but it is a family friendly trail.
My boyfriend. For some reason his braces make me feel young too. (They come off in November.)
Just on the drive up I counted 15+ types of wildflowers from the car.
Saturday, August 6, 2011
Pony ride
Last month my parents called up a friend and asked if they could bring their grandchildren over to ride his pony. He said he was just leaving but they were welcome to saddle up Sugar and borrow her for the day. Having a pony for a day was a little bit of heaven for the kids. (And Sugar was kind enough to tolerate them too.)
Megan was convinced they really could be best friends.
Megan was convinced they really could be best friends.
Friday, July 22, 2011
Fishing
The summer Erik was 5 is when he really started to get into fishing and he was always asking Jeff to take him. They had gone out twice and gotten skunked twice. Nothing. The next Saturday morning they went out I decided to go see what was going on and this is what I found:
I saw Jeff laying down while Erik took charge. All of a sudden it made sense for why no fish were being caught. The just weren’t interested in Erik’s ping pong ball sized blob of powerbait dangling from the hook!
Poor Jeff. He is as interested in fishing as he is in quilting or watching Star Wars episode I-III. But he still buys a fishing license every year.
The other day I woke to hearing Erik whisper, “Dad, can we go fishing?” I squinted at the clock and saw that it was 5:51 a.m. They went but didn’t catch anything. Later I asked Jeff if he had been laying down (Haha) and he claimed “No.”
* Erik wants me to add that he usually does catch fish. He and his Uncle Steve will have fun swapping fishing stories.
I saw Jeff laying down while Erik took charge. All of a sudden it made sense for why no fish were being caught. The just weren’t interested in Erik’s ping pong ball sized blob of powerbait dangling from the hook!
Poor Jeff. He is as interested in fishing as he is in quilting or watching Star Wars episode I-III. But he still buys a fishing license every year.
The other day I woke to hearing Erik whisper, “Dad, can we go fishing?” I squinted at the clock and saw that it was 5:51 a.m. They went but didn’t catch anything. Later I asked Jeff if he had been laying down (Haha) and he claimed “No.”
* Erik wants me to add that he usually does catch fish. He and his Uncle Steve will have fun swapping fishing stories.
Friday, April 15, 2011
Tropic, Utah
Have you ever been to Tropic? What do you mean, ‘What is that? Where is that?’ Silly. It is near Cannonville. Hmmm...still don't know? Okay, Tropic is close to Bryce Canyon in Southern Utah.
Last week Jeff and I went on a 3 day trip. This time we went to Tropic to visit our friends (and former neighbors) at the Stone Canyon Inn. Between Dixie’s cooking, Mike’s cowboy poetry and the red rock background you can’t go wrong.
One favorite was going to the dinosaur tracks. I hated thinking how last time I was here I scrambled right up the sandstone, no problem. THIS time, on the other hand, I needed Jeff’s help every step of the way. But at least with his help I made it up. And dinosaur tracks were everywhere!
It is so fun to drive on back country roads, with the windows down, and travel for miles without seeing another person. In these outdoor settings I get a glimpse of how we are part of something much more immense than what we can truly comprehend. Not in a way that makes me feel small and insignificant or unimportant. But I feel like each life has meaning and a purpose. It’s therapeutic :-)
Friday, March 18, 2011
Eating
The good news: I can eat again.
Hooray!
The bad news: I can’t eat.
Huh?!
Alright, I will back up. In early December I tripped, fell and broke my jaw. The next few weeks consisted of liquids, pureed and soft food. Fortunately my jaw never had to be wired shut and healed more quickly than expected. I have been eating normally for close to 2 ½ months.
Instead of saying “I can’t eat” it would be more accurate to say “I am having difficulty feeding myself.”
There are so many different muscles used each time you reach and grab a spoon, scoop up food and lift the utensil to your mouth. Muscles in your fingers, hand, arm, shoulder and back all cooperate for a simple task that is repeated over and over throughout the course of a meal.
As this task takes considerable effort I have been experimenting with different adaptive devices. Adaptive utensils and an item called “The Arm Thing” (what a lame name) haven’t been noticeably helpful. For now I have figured out method that works out well enough. But I skip on cold cereal and soups as they both dribble off the spoon before it gets to my mouth.
Do I want to be spoon fed?
No.
I will keep trying to do it on my own as long as I can. The exception would be, accepting help from Jeff. This morning I was craving a bowl of Coco Roo’s and Jeff helped me.
I have become a fan of smoothies as they are an easy and quick way to get a nutrient dense food. We do the standard fruit/milk combo but have also used ideas from “The Green Smoothie Diet.” This week I had a smoothie with beet/spinach/apple/banana/pineapple/nutmeg. And also: kale, spinach, blueberries, quarter of a whole lemon (including peel), celery, and banana. Those are not the recipes straight from the book. We modify the recipes and use stuff we have on hand.
But then again sometimes a large strawberry shake (With whip cream and a cherry, of course.) from Chick fil-A is what I want.
Mmmm… 770 calories of happiness.
And my taste-buds always say, “Thank you.”
Hooray!
The bad news: I can’t eat.
Huh?!
Alright, I will back up. In early December I tripped, fell and broke my jaw. The next few weeks consisted of liquids, pureed and soft food. Fortunately my jaw never had to be wired shut and healed more quickly than expected. I have been eating normally for close to 2 ½ months.
Instead of saying “I can’t eat” it would be more accurate to say “I am having difficulty feeding myself.”
There are so many different muscles used each time you reach and grab a spoon, scoop up food and lift the utensil to your mouth. Muscles in your fingers, hand, arm, shoulder and back all cooperate for a simple task that is repeated over and over throughout the course of a meal.
As this task takes considerable effort I have been experimenting with different adaptive devices. Adaptive utensils and an item called “The Arm Thing” (what a lame name) haven’t been noticeably helpful. For now I have figured out method that works out well enough. But I skip on cold cereal and soups as they both dribble off the spoon before it gets to my mouth.
Do I want to be spoon fed?
No.
I will keep trying to do it on my own as long as I can. The exception would be, accepting help from Jeff. This morning I was craving a bowl of Coco Roo’s and Jeff helped me.
I have become a fan of smoothies as they are an easy and quick way to get a nutrient dense food. We do the standard fruit/milk combo but have also used ideas from “The Green Smoothie Diet.” This week I had a smoothie with beet/spinach/apple/banana/pineapple/nutmeg. And also: kale, spinach, blueberries, quarter of a whole lemon (including peel), celery, and banana. Those are not the recipes straight from the book. We modify the recipes and use stuff we have on hand.
But then again sometimes a large strawberry shake (With whip cream and a cherry, of course.) from Chick fil-A is what I want.
Mmmm… 770 calories of happiness.
And my taste-buds always say, “Thank you.”
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