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.