Saturday, May 30, 2009

I Yam What I Yam and That's All That I Yam

Sitting in the hair stylist's chair while the grey is slowly being removed from my hair, I get introspective. I think: this is the only thing I do as a concession to age.

On the heels of that thought, is this one: I have become one of the people I used to secretly laugh at when I was young. You know; those middle-aged people who stopped maturing but kept aging? I see myself sitting there in my flip-flops, jeans and Star Trek t-shirt and I think: when are you going to grow up?

I have essentially the same wardrobe I did in high school, just a few sizes larger. I play video games when I'm supposed to be doing housework. I have 3 Game Boys because they keep coming out with cooler ones. I occasionally watch Saturday morning cartoons. I quote Mel Brooks movies and Monty Python and Star Trek. I like Gummi Bears. I wear beads, I play the ukulele, I never style my hair or wear much makeup. I think it's funny to give my age in hexidecimal. I only wear pantyhose maybe once or twice a year. I know all 150 of the original Pokemon types. I know how to pronounce "Pokemon". I love all things Disney, and when I die, I want to have my ashes exploded with the fireworks over Disneyland. WHAT THE HELL KIND OF 49-YEAR-OLD IS THAT?

There was a long silence in my head after that question. Then the answer came: "Your kind".

The fact is that I am who and what I am. I'm just not going to let any one thing define me; not my age, not my job, not even my family and most certainly not some stupid disease. All of those things are part of who I am, but not one of them alone defines me. There are no rules about who I have to be just because of my age or anything else. So there.

Dang. I'm all out of Gummi Bears. Where's my Game Boy?

Monday, May 25, 2009

A Difficult But Lovely Weekend

I'm so proud of myself!! I just got back from a fun, but physically challenging weekend, and I DID IT!! We went on our traditional Memorial Day weekend boat trip to Folsom Lake this weekend, and boating is hard work. I was worried that I wouldn't be able to pull my own weight any more. I managed, though, I managed. Not only was it a lot of physical work, but there were also some challenges to overcome. The trip start out inauspiciously. We had been driving about an hour and a half when suddenly, Bob said "Uh Oh" in that tone of voice that says something is really wrong. There was smoke pouring from the axle of the boat trailer. He carefully pulled over just as the tire went "KAPOW!". He went to go look at the damage, and found that the axle of the trailer was broken clean through. After scratching our heads for a few minutes and making some fruitless calls to trailer repair places, we unhitched the boat, left it sitting forlornly by the side of the rode and drove into the town of Tracy to get help. We got this helpful tow truck driver to come out and help us; here he is taking the wheel off:Note the angle of the wheel!
Then, he chained up the broken axle:

We limped our poor trailer to a place called "Travln Toys" and they did a great job. It turns out that by coincidence they had an extra axle for our trailer, which they had gotten with another order! So, in about an hour and a half, we were on the road again.

It was all worth it, though. What a beautiful evening! Especially after we finally got the boat in the water and went and found our friends and rafted up with them for the evening.
Here we are on our boat, the "Miracle Max":

Here's the raft of boats on Saturday night:

We had a ball the rest of the weekend. I'm exhausted, but I have a whole bunch of memories to treasure. I guess my point is that you don't want to give up doing the things you want to do, living the life you want to live, just because of PD, unless you absolutely have to. You never know what all you can do until you try.

I'm going to go limp off and watch some t.v. now....

Saturday, May 23, 2009

Mystery Donor

Someone made a big donation on my Parkinson's Unity Walk page under the name "Network for Good". I don't know who you are, but THANK YOU SO MUCH!!! What a wonderful surprise that was this morning!

Sunday, May 17, 2009

By the twitching of my thumbs...

"It" has spread to my right side. I noticed it yesterday while I was drawing; my right hand was twitching. I put it down to tired muscles. This morning at around 4:30 as I lay in bed trying to go back to sleep, my left hand trembling a bit as usual when I'm off my meds, I noticed my right thumb twitching, a tiny counterpoint. It's not much, and it only happens under certain circumstances, but that's how the original tremor on my left side started.

I didn't expect this, not so soon. But that's the way this disease works; just when you think you've got it under control, it sneaks into some new territory like an attacking enemy in the night. That's o.k.. I fought it on my left side, and I'll fight it on my right!

Saturday, May 9, 2009

Waking up with Old Man Parkinson

A typical morning for me:

Up at 4:00 or 4:30. Shuffle, shuffle, shuffle to the kitchen. Take my Zelapar, it dissolves instantly, leaving a grapefruit tang in my mouth. Notice that the dog is following me around, drooling. Feed the dog. Get my study drug out; a packet of white powder, mix it with juice. Take a vitamin B12 and my first Stalevo (levadopa, carbidopa, entacapone) of the day. Amazed that I know what all those things are now. Shuffle, shuffle, shuffle. Bent over like an old lady. Now the dog has finished his breakfast and wants a treat. Get the dog a treat, but try not to do it right over my slippers, because I prefer them free of dog drool. Shuffle, shuffle to my pill box laying on the counter. Fill it with my pills for the day: another Stalevo for the 8:00 a.m. dose, plus 4 Requip XL pills. 5 more Stalevo tablets for 8:00, 10:30, 1:00, 3:30, and 6:00. Put the pill box in the special shoulder bag I made for it. The bag is getting worn now. Time to go downstairs and make coffee. Shuffle, shuffle... step carefully down the stairs. Look out for the cat zooming under my feet. Forgot my slippers upstairs; shuffle, shuffle, shuffle back up to get them. Back downstairs with warmer feet. Make the coffee, then sit at the computer, exhausted, and wonder how I'll get through the day. Waiting for the levadopa to kick in, I remind myself that so many people have worse things to worry about. I am a lucky person. I know this, but in the morning I forget sometimes.

I'm so glad I have a dog to drool in my slippers, a cat to trip me on the stairs, a house in the woods with beautiful trees all around and the most wonderful man in the world to love me.

Friday, May 8, 2009

Article about me in the company newspaper

The company I work for very kindly had an article written about me in the company paper, "New Horizons". My boss and HIS boss and I were all interviewed on the phone by a young lady named Amy who was not only a very good writer and very efficient, but also very nice, too (good job, Amy!). Anyway, here's the article:

Marian Bumala, circuit design engineer, embraces challenge. Working for the past 25 years at the Advanced Technology Center in Palo Alto, Calif., she shoulders a lot of responsibility in developing complex instruments to further our nations’ space exploration. So it is no surprise when she was diagnosed six years ago with young-onset Parkinson’s disease, a degenerative disease of the brain that can impair motor skills, that she faced the challenge squarely on all fronts. But Bumala’s story isn’t just about her disease. It’s about teamwork between a hard-working employee and colleagues who value her input.

Continually amazed by her teammates’ support, Bumala praises Space System Company for its commitment to helping employees living with diseases such as Parkinson’s. “I am so thankful for my job and for my co-workers outpouring support as I learn to deal with the emotional and physical effects of living with this disease. I have been able to remain an active and contributing member of the team in spite of my illness. There’s no doubt in my mind that staying active on my work team has contributed to my success in dealing with the disease thus far,” says Bumala.
Her manager, Stephen Fuselier, says he was saddened when he heard of Bumala’s diagnosis, and is committed to ensuring she remains a contributing member of the team. “We will continue to do everything we can to accommodate Marian’s needs,” says Fuselier. “She is a valuable asset to this organization and makes great contributions to our team and our customers.”

Bumala also has the support of many peers. Her colleagues are tuned into Bumala’s diminished capacity for multi-tasking and sitting for long periods of time in meetings. “My colleagues’ support enhances my morale,” says Bumala. “I am encouraged and motivated to keep working as long as the disease allows.”
Earl Aamodt, research engineer, has worked with Bumala for the past 23 years and has provided her with a lot of emotional support since her diagnosis. “When I found out Marian was diagnosed with Parkinson’s disease it hit close to home because my mother passed away from the disease,” says Aamodt. “Marian has become a close friend of mine over the years and she knows I am available anytime she needs me whether it be for emotional support or help on the job.”

Bumala has directed her self-described proactive personality to help fight the disease on the national stage. She is a passionate fundraiser for the Michael J. Fox foundation and is participating in the Parkinson’s Unity Walk this April in New York. “Being proactive and positive is the best medicine,” she says. “I have been able to raise over $6,000 for Parkinson’s disease research largely thanks to my generous co-workers. The company even donated a wheelchair for me to use during a 5K walk I participated in for Parkinson’s disease in San Francisco last year.

I'm so grateful for my job, my immediate superiors (who are also friends of mine) and my wonderful co-workers. What an amazing group of people!

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.