I can see by our wall clock that it's story time, folks. Grab a snack and get cozy. Today I'm going to tell a love story. It involves all the things that a really good love story should have - friendship, independence, sneakiness, significant hurdles, emotional pain, sorrow, struggle, accomplishment, growth, joy, pride, and a lasting, almost unexplainable bond.
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One night, many many years ago, an independent-minded woman (we'll call her "Em") decided to call up a few friends to go to have a few drinks after work. Em, age 26, lived alone in a one bedroom apartment with a set-up that one could see later in the show "Laverne and Shirley". You had to walk "underneath" the street to get to her door and, from her window, all she could see were shoes strolling by. Em was the second-youngest child in her family, but she was the first to move out alone from her parents home, and probably the only member of her family who would occasionally call up friends to go out for drinks. Em's father passed away years before, and Em did her best to not worry her mother with her life "in the big city". She shouldn't have worried, as Em's mother was very proud of her daughter's achievements and her strength.
Em and her friends went to a favorite bar and started their evening. Unbeknownst to Em, a young man noticed her as she sat down. This man (we'll call him "Dee") couldn't help but smile as he appreciated Em's laugh, her smile and how at ease she was. Dee, on the other hand, was not at ease at all. At 21, he was still nervous at bars and he was even more nervous because the group of friends he was waiting for seemed to have all made other plans. He walked to a corner of the bar and made a call to his closest friend, Paul. Dee explained his situation to Paul - he was alone in a bar and there was a group of women he'd noticed, but he needed a friend to be with him, to "even the numbers". Paul was hesitant and wasn't sure he wanted to go out, so Dee told a little white lie. He said he'd already talked to the women and they wanted to meet Paul. That was all it took ... Paul was on his way to meet Dee and these women.
Well as often happens, everyone got along very well. Em was charming and sweet, Dee was a good story-teller and attentive, and Paul was the life of the party, as usual. Things went so well, in fact, that soon afterwards Paul and Em were quite the couple. Yes it seems that Dee had mis-judged the situation and somehow he'd set up Paul with Em, instead of getting her attentions for himself.
After a few months, Paul was no longer the life of Em's party. However she continued her friendship Paul and, more importantly, with Dee. And soon after that, the friendship had become something more. Em and Dee found themselves to be a pair ... an odd pair, for sure, but a pair. Em worked to support herself, while Dee was comfortable living with his parents while getting his college education and working a part-time job. Em enjoyed travel, especially road trips on weekends and Dee was still spending any free time he had planning for his future goals. Em was good with numbers and enjoyed working in a business environment but Dee could never see himself working for a corporation in a "regular" job.
Just a year after that night at the bar, Dee and Em decided to get married. Dee's parents were against it, thinking that Em would only serve to distract Dee from his goals. They also weren't comfortable with Em's age, or the working-class family she came from. But, like any loving pair, Em and Dee could not be swayed. So one night, Dee once again called his closest friend, Paul. Dee explained that he and Em were eloping and that they needed a best man. And, once again, Paul agreed to lend a hand.
Em and Dee were married on February 28, 1963. They returned to their families and friends to share their happy news. Em's mother accepted them with open arms and asked only that Em and Dee please get married in a church, and they did so, but February 28th was always the anniversary they would celebrate. Dee's parents declined to attend, as they were still against the union, and it wouldn't be until a couple years later that they'd start to rebuild their relationship with their son ... and get to know their daughter-in-law. By that time, Em and Dee had a daughter and, in 1968, they'd have a second daughter.
And all these years later, Mom and Dad are still close to Paul and his family. (In fact, it was Paul who pretty much saved Dad's life during his heart attack a few years ago.)
Happy 49th wedding anniversary to Em, my mom, who is still very independent, level-headed, encouraging and strong ... and to Dee, my dad, who never did lose focus on his life goals or his friendships (and who still tells a white lie every now and again to get what he wants).
Tuesday, February 28, 2012
Friday, February 17, 2012
Tail of a Trial
I recently expressed an interest in participating in a Phase II double-blind trial for an already approved medicine - Pioglitazone (which is for treatment of Type II Diabetes) that MAY have benefit towards the treatment of the effects of Parkinson's Disease. Yesterday was my appointment to review my medical history to see if I'd be allowed into the trial. Here's what happened:
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Well for starters, the Awesome Fiance is a pretty amazing guy. Since this was a preliminary exam with minimal REAL information exchanged, I told him I’d just meet him at home and fill him in when I got home afterwards. I don’t know why I was surprised to see him walking up to me as I was checking in. He had to walk several blocks in very cold, rainy weather and he STILL doesn't think it was a big deal at all. He tells me that anyone would do the same. He stayed with me to keep me company until my name was called – it was very sweet.
I was called to an exam room by a Research Nurse, whom I've met with before. We reviewed my recent medical history ("recent” being no more than 7 years ago). I recalled a few allergic reactions to medication, had a list of every pill I take (and when, and why), and from there we checked my height, weight, took a urine sample and did a blood draw. (My compliments went to the very skilled hands of the phlebotomist … it was completely painless!) From there, we took my temperature, did two blood pressure readings (sitting and standing) and an ECG – which took longer to set up than to actually run.
Dr. M was the doctor whom I went to for a second opinion when I was first diagnosed last year. Well, Dr. M is the principal investigator of this study, which is how I found out about it. Dr. M came in and tested my eyes, reflexes, muscle strength – all normal. We tested my sense of smell, something that some Parkinson’s patients lose over time. This is something I rather dread – as a sense of smell is a BIG part of your sense of taste and, well, me loving food and all …
Anyway being presented with the first scratch-and-sniff, I guess I was feeling cocky. I could have said “campfire” but nooo – showoff that I am, I said it smelled of toasted nuts, maybe cashews, with a mushroom undertone. Dr. M said “well it just says that it’s supposed to smell like peanuts but sure – we’ll go with what you said.” Properly embarrassed, I then sniffed the next sample with just my left nostril and said “mint". Dr. M said I was correct. For the right nostril, I sniffed and said “uhhhh – I got nothing.” He scratched again and I inhaled deeply but … I didn’t get anything at all. “Maybe … the beach?” I said weakly. “Ok, let me offer some ideas” he said. “Cola, Cinnamon, Roses, or Paint Thinner?" I took another deep breath, this time using both nostrils and said “well it’s not paint thinner. They’ve been painting in the halls of my office for two weeks so I KNOW that scent. Maybe it could be ….. cola????” It was, of course, paint thinner.
Aside from getting that obviously wrong, everything else was on target. I haven’t progressed much since the last time the doctor had seen me (October), which was good to hear. The study allows for 10 participants from my state and five have signed up, 'tho one who had to drop out due to something the lab work found. Barring anything unusual in MY lab results (which I’ll hear about in a week or so), I’ll be subject #5. I’ll go back in a month and we’ll do this all again, only more extensively and I’ll be given my first dose of Pioglitazone. I’ll be watched for any reactions for about an hour and … and then we’ll just go from there.
I’ll either be given 15mg of the med, 45mg, or a placebo. The test is scheduled for 44 weeks, with about 6 checks through the testing period to track my response. Even if I do wind up taking the actual medication, it may do nothing at all, it could slow down the progress of my Parkinson’s, or it could be that Pioglitazone will protect my nerve cells and stop the progression altogether. Phase I of the test (done on animals) showed that it protects nerve cells - but we need to prove it happens to humans, too.
Clearly this isn't going to be a quick result but it does look like, for now, my time is not limited by the progression of my Parkinson's. Barring this stuff changing my mood radically (or sprouting a tail), I think we’ll hardly notice much of difference for a while.
Yanno, unless I grow a tail.
***********************************************
Well for starters, the Awesome Fiance is a pretty amazing guy. Since this was a preliminary exam with minimal REAL information exchanged, I told him I’d just meet him at home and fill him in when I got home afterwards. I don’t know why I was surprised to see him walking up to me as I was checking in. He had to walk several blocks in very cold, rainy weather and he STILL doesn't think it was a big deal at all. He tells me that anyone would do the same. He stayed with me to keep me company until my name was called – it was very sweet.
I was called to an exam room by a Research Nurse, whom I've met with before. We reviewed my recent medical history ("recent” being no more than 7 years ago). I recalled a few allergic reactions to medication, had a list of every pill I take (and when, and why), and from there we checked my height, weight, took a urine sample and did a blood draw. (My compliments went to the very skilled hands of the phlebotomist … it was completely painless!) From there, we took my temperature, did two blood pressure readings (sitting and standing) and an ECG – which took longer to set up than to actually run.
Dr. M was the doctor whom I went to for a second opinion when I was first diagnosed last year. Well, Dr. M is the principal investigator of this study, which is how I found out about it. Dr. M came in and tested my eyes, reflexes, muscle strength – all normal. We tested my sense of smell, something that some Parkinson’s patients lose over time. This is something I rather dread – as a sense of smell is a BIG part of your sense of taste and, well, me loving food and all …
Anyway being presented with the first scratch-and-sniff, I guess I was feeling cocky. I could have said “campfire” but nooo – showoff that I am, I said it smelled of toasted nuts, maybe cashews, with a mushroom undertone. Dr. M said “well it just says that it’s supposed to smell like peanuts but sure – we’ll go with what you said.” Properly embarrassed, I then sniffed the next sample with just my left nostril and said “mint". Dr. M said I was correct. For the right nostril, I sniffed and said “uhhhh – I got nothing.” He scratched again and I inhaled deeply but … I didn’t get anything at all. “Maybe … the beach?” I said weakly. “Ok, let me offer some ideas” he said. “Cola, Cinnamon, Roses, or Paint Thinner?" I took another deep breath, this time using both nostrils and said “well it’s not paint thinner. They’ve been painting in the halls of my office for two weeks so I KNOW that scent. Maybe it could be ….. cola????” It was, of course, paint thinner.
Aside from getting that obviously wrong, everything else was on target. I haven’t progressed much since the last time the doctor had seen me (October), which was good to hear. The study allows for 10 participants from my state and five have signed up, 'tho one who had to drop out due to something the lab work found. Barring anything unusual in MY lab results (which I’ll hear about in a week or so), I’ll be subject #5. I’ll go back in a month and we’ll do this all again, only more extensively and I’ll be given my first dose of Pioglitazone. I’ll be watched for any reactions for about an hour and … and then we’ll just go from there.
I’ll either be given 15mg of the med, 45mg, or a placebo. The test is scheduled for 44 weeks, with about 6 checks through the testing period to track my response. Even if I do wind up taking the actual medication, it may do nothing at all, it could slow down the progress of my Parkinson’s, or it could be that Pioglitazone will protect my nerve cells and stop the progression altogether. Phase I of the test (done on animals) showed that it protects nerve cells - but we need to prove it happens to humans, too.
Clearly this isn't going to be a quick result but it does look like, for now, my time is not limited by the progression of my Parkinson's. Barring this stuff changing my mood radically (or sprouting a tail), I think we’ll hardly notice much of difference for a while.
Yanno, unless I grow a tail.
Tuesday, February 14, 2012
The Lucky One
Oh I am the Lucky One.
You understand my weakness for all-things animal (especially feline). You silently provide support when my strength has withered and you share your confidence with me when mine has fled. You nourish me with your creativity, both in the kitchen and in your point-of-view. You share with me your concerns, worries, and troubles while encouraging me to move beyond my concerns, worries and troubles. You laugh with me and cry with me. When I am at my "Polly Anna" worst, you are the realistic voice I need to hear. You help me stay grounded when I'm about to float away and you help me to fly again when it's appropriate to do so. You remind me to continue forward, no matter the barriers, and reassure me that you will be right beside me.
And you always ... always are.
Which makes me the Lucky One.
You understand my weakness for all-things animal (especially feline). You silently provide support when my strength has withered and you share your confidence with me when mine has fled. You nourish me with your creativity, both in the kitchen and in your point-of-view. You share with me your concerns, worries, and troubles while encouraging me to move beyond my concerns, worries and troubles. You laugh with me and cry with me. When I am at my "Polly Anna" worst, you are the realistic voice I need to hear. You help me stay grounded when I'm about to float away and you help me to fly again when it's appropriate to do so. You remind me to continue forward, no matter the barriers, and reassure me that you will be right beside me.
And you always ... always are.
Which makes me the Lucky One.
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