Thursday, February 25, 2010

One day closer to spring!

At the beginning of February I started watching the plants knowing that, because despite their bare and unadorned branches, they are filled with life just waiting to happen.

(Yes, I can be a tad impatient. Why do you ask?)

Finally it is happening! The buds on tree and shrub branches are beginning to grow. This morning I saw little bits of green peeking out from the leftover dead of a cut down daylily. Once the crocus, daffodil, and tulip come up through the soil, the snow isn't quite so bothersome. The snow will eventually go away, and there are a whole lot of tulips that I'm waiting for.

Woo-hoo let's hear it for SPRING!

(Could you hurry...just a little.)

Friday, February 19, 2010

Q & A round two

I had my quarterly clinic visit this week. We showed up at 11:30am and left at 5:40pm. After visiting with all the people there, by the end of the day, I felt like a broken record having repeated myself over and over and over.

Since I said that there would be a Q & A round two this week, here we go.

Q: Are you in a lot of pain?
A: No. Discomfort would be a better word, and that is only when I get muscle cramps.

Q: Can you feel the disease progress inside your body?
A: As the muscle atrophy progresses everyday tasks become difficult. I try to adapt and keep doing as many of the tasks as I can. And then one day, I find that there is something that I just can't do anymore. For instance right now, it is difficult for my ring finger on the right hand to push down the "o" key while typing. So sometimes I use my middle finger instead.

Q: Is your diaphragm weak? And has your breathing been affected yet?
A: My breathing is still good, although I've noticed that there is less power to project my voice the way I would like. At Wednesdays clinic I scored 94 which I think is what my last score was. I have started doing a breath stacking exercise which will help strengthen my lungs (the respiratory therapist would say I didn't explain it very well).

Q: Have you started recording your voice.
A: No. I probably ought to be more proactive on this one. We have a friend, Tim S., who is a director. He spent one day following us around with a fancy video camera. We went up the canyon and to Red Butte Gardens (this was during the summer), and we got 4 tapes worth of footage of "A day in the life of..." sort of thing.

Q: What are some recent adaptations to your house?
A: We got a small microwave that sets on the counter so I don't have to reach up to the other one which is above the stove. I also made sure to get one that has a handle so that it opens by pulling, which is easier than pushing a big button to open. When we purchased a new standing lamp we made sure to get one that had a switch in the middle and not the top. We previously replaced doorknobs with levers. I mentioned to Jeff how we should add grab bars to the bathroom/shower. I now have an electric can opener versus a hand held opener. I have moved my clothes to the lower shelves so I don't have to reach up.

Q: When other people complain about little stuff does it annoy you?
A: Sure there are times where a person is complaining and I am thinking, "They are making this into a much bigger deal than it really needs to be." But who doesn't think like that at one point or another. I'm sure people have rolled their eyes when they hear me complain how the shrubs in front of our stake center were pruned. (A stake center is a church building. The plants were pruned all rounded out. Anyone with any kind of landscape sense knows that a smooth sumac and those rose bushes should be left to their natural shape!)

We all have challenges and trials. And hopefully we learn to be more compassionate from them, instead of comparing and complaining how much harder our life is.

Q: How do you stay so positive?
A: Hahahahahahahahahahahahhahahaha...oh that is funny! Seriously, I need to wipe away my tears from laughing so hard! Hahahaha.

What was the question again? Oh yes, staying positive. Well I go through periods where I'm a mad and want to smash every heavy glass in the cupboard. Each time I loose an ability to do something I mourn the loss. Some periods of mourning last longer than others. Then I move on.

When the question was first asked, after I laughed, my response was quick. Prayer. Yesterday my dad told me that every day he prays that I can feel the love of God. That means a lot know people are thinking about me and praying for me. When I pray, sometimes I lay it out and tell my Heavenly Father what I happen to be angry about. Other times I express gratitude for the ways I have been blessed. And also, I pray for peace and for perspective.

Saturday, February 13, 2010

Daddy-Daughter Dance

Claire is in here element when it comes to Valentines Day. All year long she does what comes natural to her and then come February 14 it is her day to shine.

Claire always gives a hug and a kiss.
Every day she says "I love you"
She is always making cards for people.
The color pink...she has got that one down.

Valentines Day is a piece of cake for our girl.

Last weekend Claire and Jeff went to Daddy-Daughter Dance. Claire put on her most fancy pink dress for the event. When they arrived, Claire was given a corsasge, they did a craft project, their picture was taken, they were served dinner, and there was dancing too.

We asked Claire what she thought about the evening, and she responded, "I LOVED it!"

Tuesday, February 9, 2010


It has happened again. ALS, that dirty rotten thief, has stolen even more.

In the past when a task grew difficult I had reserve muscle so I could figure out a way to adapt. Well the reserves are gone. Instead of noticing changes in my body monthly, it seems to be weekly. Here is a list of noticed changes since the beginning of the year:

-If I am sitting on the ground I need assistance of some sort to resume a standing position (a person or a chair etc.).
-If my hands are cold I don't have enough hand strength to text. My phone has a touch screen.
-Scissors are difficult to use.
-If I want to wear earrings someone else puts them in. (well that one has been around for awhile)
-I am extremely cautious descending stairs without a handrail.
-Jeff has noticed changes in my voice (so have I). There is more effort to enunciate. My voice tires and cracks even more easily. If we are in a noisy group setting I
don't talk much because of the extra effort.

That last one is scary.

But life is still good. And I'm not just saying it. I am believing it.

A year ago I grumbled about how "There are other things to talk about" but that attitude was sooooooo 2009. Turns out people have a lot of questions. I think next week I will do another round of Q & A on the blog. If you have any ALS questions get them in.

And Rebecca, while your question made me laugh, I'm NOT going to answer it. Hee Hee.

Thursday, February 4, 2010


Erik started singing a new song at dinnertime. It goes something like this:

Claire and _______(insert boys name here)
sitting in a tree.
First comes love, then comes marriage,
then comes Peter in the pumpkin carriage.

He didn't get the ending right but I'm not going to bother with that. Claire then started singing the song back, but using Erik and a girls name. She stopped and asked what k-i-s-s-i-n-g spelled. As soon as we said "kiss", Claire got a big smile on her face and started giggling. She then began singing the song with more gusto. All the while Erik was yelling "Nooooooo!"

The singing went back and forth. Megan didn't want to be left out of the fun so she started hollering. Soon the three of them were running around the table chasing each other and ran off to another room.

At this point Jeff and I could have called them back to clear their dishes and give them a mini lesson on table manners. But the room was suddenly quiet and it was just the two of us. Kindof like a date.

Except by then the screaming had started again in another part of the house.

In the past I have wondered just how old do my kids have to be before there is a 24 hour period of no crying. We recently had that when just the kids went to visit my parents for a few days. Our home was quiet and calm and there was no crying. By the end of the first day I was already missing them! Because with all that quiet came the absence of kids laughing, giggling, story time, tucking into bed, hugs and kisses. It fell into the "grass is greener" category where you want what you don't have. And when you finally get it, it isn't as great as you thought it would be.

Well I got a ton done the few days they were gone. When they arrived home my children came running in the door, just about knocking me over with hugs and kisses. Welcome home!

And I'm sure someone was crying within 10 minutes. Oh well ;-)