Muscular Dystrophy

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.

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.

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.

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.

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.

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/

A health secret

I  have had marginally high blood pressure for most of my adult life. When I joined the Army in in the late 1960s I packed all kinds of aids into my dopp kit. The Army confiscated them from me. Once I started Basic Training my BP dropped to normal. I am sure that was due to plenty of exercise and a good diet. At the time each military unit prepared its own food and despite what you may have heard about mess halls it consisted of good balanced meals. I'll admit I couldn't eat the weekly serving of liver but it was still balanced.

After the Army I continued to have high BP. I resisted doctors' advice to medicate for it.

About eight years ago I cured my high blood pressure when our Boston Terrier Kibbitz came to live with us. It should be a widely-know fact that a cat or a dog can bring your blood pressure down. Don't know why it isn't. Two-way street, of course. You have to treat the dog or cat well. For the sake of this blog entry I will talk about dogs.

One of the most important things in a dog's life is consistency. Put the dog on a schedule: meals, walks, playtime, bed time. She'll love it.

It should go without saying that you should never strike a dog. If I walk up to Kibbitz and raise my hand she starts looking for a treat. No hitting. If you're trying to train a dog one of the best devices is a cola can with a dozen coins in it. Tape on the opening to keep the coins from falling out. If you shake the can it makes a loud, annoying noise and the dog will stop doing whatever she might have been doing wrong. 

Pet your pet. My blood pressure is always in the normal range and I suspect Kibbitz's is, too.

A word about cats. One of the ways a cat will show affection is by scent-marking you. For years I had a cat named Farley. When I returned home from work Farley would spend a great deal of time rubbing the area above his eyebrows on me. Low BP for cats, too.

Wheelchairs, Round 2

I know a lot about wheelchairs because when I was a kid I had an uncle and two aunts with limb-girdle muscular dystrophy. This is not the "Jerry's Kids" variety but rather a disease that allows the victim to live into his or her 50s. My uncle was the oldest of the three siblings. He rarely left his chair. Compare it to the more conventional metal chair which my aunts used.

When there was an empty chair I would occasionally get into it and try maneuvering it around. Not an easy thing. The small town where we lived had small sidewalks. Once I got the chair onto the sidewalk I may have had a few inches leeway on either side. I'd go a short distance and then the chair would slip off the sidewalk and onto the street. I'd have to get out of the chair and lift it back onto the sidewalk. Not exactly what an MD patient would do. It was a good learning experience.

Other relatives built a ramp going into the house. I would often try to wheel the metal chair up the ramp. I simply couldn't do it. I didn't have a great deal of strength when I was a kid. Perhaps if I tried it now, knowing a little more as I do about wheelchair braking I could have gotten up. 

There's one other thing I have to mention. When I would wheel any on my relatives around town I noticed that people we passed would avoid looking at us. Not sure why that is. It was another lesson

     

Wheelchairs, Round 1

When we started going to Barnes Jewish Hospital on a regular basis in May I started using the wheelchairs they have available for their patients. Diana usually commented that I got one of the wider wheelchairs. Thing is, they're all wide. Sign of the times. These are chairs designed for the person weighing up to 300 pounds.

This weekend when we went grocery shopping I got into a different kind of wheelchair, the kind with a shopping cart attached. As long as I have to be semi-mobile I've decided I really like these shopping carts. I can zip around the store like crazy. I'm grateful to the grocery store for providing these.

As the title of this post implies I will have more to say about wheelchairs tomorrow.

The Most Important Thing

I've been working on this blog as if I'm the main character involved. Not true.

My wife Diana has completely rearranged her life to try to make me comfortable. Before the cancer we shared chores around the house. I prepared most of the meals, did some of the laundry on weekends, helped with menu-planning and grocery shopping, took the dog on longer walks than just going to the back yard. Diana now does all of those things. As well she washes the dishes, makes the bed, and takes trips to the basement to get stuff for me (it's not an easy walk).

I can only begin to describe how lucky I was to meet Diana and even luckier that she consented to marry me. We've been married almost 20 years. I wish it could be 20 more.

Mortality

I don't know how many people think about their own mortality, the end of days, but I have thought about it for some number of years. There was a period of time when I thought that 71 was the optimum age. Be careful what you wish for.

From what I can understand of the statistics I can find about mortality an American male born in 1941 could expect to live into his or her early 60s.  But I really don't know.

I may have started thinking about my contemporaries in 2004. My two best friends in high school died on consecutive days in May, 2004. One had cancer, the other had a massive heart attack.

I've watched my maternal family. There were seven children. Three of them had limb/girdle muscular dystrophy which ended their lives early. The others died in their 50s with one exception. My uncle Bob is 84 and going strong, more power to him.

There was even a period of time when I tracked the deaths of high-school classmates.. I quit doing that in 2008. I'm not really in touch with any of my high-school classmates now but I expect that will change. Not that I am trying to reestablish relationships but that I want to give others in my class a chance to know where I was and what I was doing.

May 14th

On Saturday, May 14, 2011, we went to Barnes Jewish Hospital for a followup check on some things. I learned, among other things, that I had an elevated level of calcium which is not a good thing. After some more discoveries I admitted myself as an emergency patient and stayed in the hospital a couple of days. They allowed me to see  my X-rays. There was a tumor on my partially-collapsed  right lung and evidence of bone cancer to my right hip.

After a couple of days I came home and returned to BJC (Siteman Cancer Center) for two weeks of radiation therapy for my lung cancer and bone cancer.

Since then I've been at home. I can more or less take care of myself. I can get dressed, feed myself lunch, take the dog out to water the back yard.

Siteman sent me home with a long list of medications. Among other things I am taking morphine for the pain and it's actually working. I've cut back a little on the other medications (you can only take antibiotics for so long without ill effects).

In mid-July I began hospice. It's a great thing. They have taken over monitoring my medications, provided me with oxygen, and given me advice. A hospice worker comes by once a week to see how I am doing.

My status now is that I feel OK. No insurmountable pain. And I invoked my bucket list: I subscribed to the premium TV channels like HBO and Showtime.

Lots more to think about but for now I am going to relax.