In a previous blog entry I mentioned that on the maternal side of my family there were three siblings who had limb girdle muscular dystrophy. I will depart from the usual theme of this blog to talk about limb girdle muscular dystrophy which I will refer to as MD.
It is not the "Jerry's Kids" MD. Related but not the same.
The oldest of the three was Dale. He stayed in his wheelchair most of his life. He didn't attend high school (more about which later). His interests were many. Among other things he was a stringer for a local morning newspaper, the Journal Herald. One time he asked me to take him to a new construction in the area. I believe it had something to do with water processing. He wrote an article about it. When he submitted his article to the newspaper he asked them to credit me with the photo. Dale lived to age 53.
The middle sibling was Mary. Her early reaction to MD was denial. She did not finish high school, either. She did, however, strike out on her own. She bought a small house in a suburb of Dayton and began working as a coordinator for charitable organizations. The organization she did not work for was MDA, the Muscular Dystrophy Association. Ironically Mary died of cancer at age 50.
The youngest sib was Ginny. She did finish high school and this is the remarkable thing: Our high school had absolutely no handicap access. No ramps, no elevators, no curb cuts, no anything.
Ginny didn't always use a wheelchair to get around. She did learn how to drive a car and got around quite nicely with that. (And here's a reminder to myself to write an entry about the car and Mamie the Dog.)
She lived a full life to age 56.
Sunday, July 31, 2011
Saturday, July 30, 2011
Food
I've mentioned that I tried fixing dinner once and made a mess of the kitchen. That doesn't mean that I will stop trying. I'll just try to be a little neater. Diana will still prepare most of our meals but I will do some of them. For several years now I have tried to stick to a pattern when planning a menu for the week. We usually have three main dishes for two meals per dish. The pattern is one fish dish, one meatless meal, and one meal with meat, usually poultry. That leaves one more meal. Sometimes we have pizza (so shoot me) or possibly leftover soup and some freshly-baked bread.
Our favorite recipes come from a book called Pillsbury: Fast and Healthy Cookbook. Diana bought this for me several years ago. One would expect lots of cookie recipes (Pillsbury). Not true The book has a wide variety of dishes such as Tortellini with Tomato Sauce. Good and healthy.
We seldom eat out mainly because we don't like to leave Kibbitz home alone but also because the typical restaurant serving is adequate for two-and-a-half really hungry people.
When I first learned about the cancer my appetite plummeted to near zero. Now, however, I can eat a bit more. One of my meds is helpful: dexamethasone. Does wonders for the appetite.
So... hooray for food.
Our favorite recipes come from a book called Pillsbury: Fast and Healthy Cookbook. Diana bought this for me several years ago. One would expect lots of cookie recipes (Pillsbury). Not true The book has a wide variety of dishes such as Tortellini with Tomato Sauce. Good and healthy.
We seldom eat out mainly because we don't like to leave Kibbitz home alone but also because the typical restaurant serving is adequate for two-and-a-half really hungry people.
When I first learned about the cancer my appetite plummeted to near zero. Now, however, I can eat a bit more. One of my meds is helpful: dexamethasone. Does wonders for the appetite.
So... hooray for food.
Friday, July 29, 2011
Comments, Comments, Comments
Everyone who tries to post a comment to my blog has some kind of problem with it. I have a setting wrong and I can't get it right. I will work on it tonight when my computer genius (Diana) returns from work. In the meantime send me an e-mail. At least I will get it.
Patience.
Craig
Chaplain
My hospice care is provided by LSS, Lutheran Senior Services. Among the many things they offer is counseling by a chaplain. Yesterday I spent a few hours with the local chaplain Patrick. One of the things I sought was a way to find a pathway between the religious beliefs that Diana and I have. Patrick was helpful. He recommended a couple of books, one of which is The Case for Christ by Lee Strobel. That is available as an iBook so I bought it and am reading it. Interesting book. Patrick has a couple more recommendations for me and I will read them, too.
We talked about lots of other things including favorite fiction authors (Lee Child, for example) and TV shows. He likes "Lost."
We will meet again in a couple of weeks. In the meantime Sue will be here today. Need to talk with her about meds because I woke up in the middle of the night with a screaming case of heartburn which was probably brought on by the cancer meds.
Also when I woke up the song "Metal on Metal" by Anvil was going through my mind. It's a heavy metal song. Explain that to me.
We talked about lots of other things including favorite fiction authors (Lee Child, for example) and TV shows. He likes "Lost."
We will meet again in a couple of weeks. In the meantime Sue will be here today. Need to talk with her about meds because I woke up in the middle of the night with a screaming case of heartburn which was probably brought on by the cancer meds.
Also when I woke up the song "Metal on Metal" by Anvil was going through my mind. It's a heavy metal song. Explain that to me.
Thursday, July 28, 2011
A Day in the Life
I have a lot going through my mind and will create another blog entry for today.
As minor as it seems I think a lot about blue jeans. I have perhaps 10 pairs of jeans and none of them fit. I can cinch the belt but they still have a tendency to fall off. I hope we can resolve that this weekend when Diana is home and can take me to the store. In the meantime, I look like the falling pants video.
I usually get up before Diana leaves for work. I loaf around a while sipping a cup of juice and then eat a light breakfast. Then I take a nap. That lasts until Diana arrives at work and gives me a call to let me know she arrived safely, an important thing.
The next thing in line is cleaning up. We have a very nice shower with hand braces but I feel shaky using it so I don't do that unless she's home to call 911 in case I fall and concuss myself. We do have a seat for the shower but I am not comfortable using it.
After that I recline on the couch and scan through news items on my iPad. That is a super device. In addition to being able to browse the web I can play the occasional game. The current favorite is Card Shark Solitaire. I play Klondike 3. I have downloaded a version of one of the most popular games, Crazy Birds, but it hasn't grabbed hold of me... yet. Oh, yeah. I also play Australian Patience. My current win percentage in 5%. Not easy.
Light lunch and some more napping. Under other circumstances I might feel guilty but I don't.
I usually watch a movie I've recorded. Showtime and HBO were on my bucket list. Every now and then there's a good movie. More often it just becomes background noise.
Kibbitz has adapted herself to my schedule. She snoozes a lot. Right now she is having eye problems. The vet first diagnosed her with pinkeye. Whatever it is, it's more serious with that. Our vet can't cure it so we will take Kibbitz to a dog ophthalmologist (limited office hours) later this week.
Diana returns home in the early evening. She fixes supper. I did that once this week and make a horrible mess.
Kibbitz perks up and we play with her a while.
We then watch one, maybe two, of the shows we've recorded. Current favorites are "In Plain Sight," "Warehouse 13," "Rizzoli and Isles,"and of course "The Big C."
Diana just let me know that the Comments button doesn't work. I have to adjust it.
Enough for now.
As minor as it seems I think a lot about blue jeans. I have perhaps 10 pairs of jeans and none of them fit. I can cinch the belt but they still have a tendency to fall off. I hope we can resolve that this weekend when Diana is home and can take me to the store. In the meantime, I look like the falling pants video.
I usually get up before Diana leaves for work. I loaf around a while sipping a cup of juice and then eat a light breakfast. Then I take a nap. That lasts until Diana arrives at work and gives me a call to let me know she arrived safely, an important thing.
The next thing in line is cleaning up. We have a very nice shower with hand braces but I feel shaky using it so I don't do that unless she's home to call 911 in case I fall and concuss myself. We do have a seat for the shower but I am not comfortable using it.
After that I recline on the couch and scan through news items on my iPad. That is a super device. In addition to being able to browse the web I can play the occasional game. The current favorite is Card Shark Solitaire. I play Klondike 3. I have downloaded a version of one of the most popular games, Crazy Birds, but it hasn't grabbed hold of me... yet. Oh, yeah. I also play Australian Patience. My current win percentage in 5%. Not easy.
Light lunch and some more napping. Under other circumstances I might feel guilty but I don't.
I usually watch a movie I've recorded. Showtime and HBO were on my bucket list. Every now and then there's a good movie. More often it just becomes background noise.
Kibbitz has adapted herself to my schedule. She snoozes a lot. Right now she is having eye problems. The vet first diagnosed her with pinkeye. Whatever it is, it's more serious with that. Our vet can't cure it so we will take Kibbitz to a dog ophthalmologist (limited office hours) later this week.
Diana returns home in the early evening. She fixes supper. I did that once this week and make a horrible mess.
Kibbitz perks up and we play with her a while.
We then watch one, maybe two, of the shows we've recorded. Current favorites are "In Plain Sight," "Warehouse 13," "Rizzoli and Isles,"and of course "The Big C."
Diana just let me know that the Comments button doesn't work. I have to adjust it.
Enough for now.
Humor
Diana and I have begun to watch a Showtime series called "The Big C." If you receive Showtime I strongly recommend that you watch it. If not you can follow it on Twitter or Facebook. You can also see more about it on Showtime's web site. Try it out! http://tinyurl.com/3g6wgdf
The premise of the show is that a young woman has gotten cancer and is learning how to deal with it. While the show takes cancer very seriously the producers also realized that a healthy dose of humor makes just about any difficult subject easier to follow.
On a slightly different track someone recently asked me how she could comment on my blog entries. I have not tried this but I think it's as easy as poking the comment button that appears at the bottom of each blog entry.
The premise of the show is that a young woman has gotten cancer and is learning how to deal with it. While the show takes cancer very seriously the producers also realized that a healthy dose of humor makes just about any difficult subject easier to follow.
On a slightly different track someone recently asked me how she could comment on my blog entries. I have not tried this but I think it's as easy as poking the comment button that appears at the bottom of each blog entry.
Wednesday, July 27, 2011
P2V
After I posted the blog entry about dogs being good for your health I saw an article on TV about an organization called P2v.org. Exactly the same subject. Worthwhile reading.
http://p2v.org/
http://p2v.org/
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