I suppose it comes as no surprise that my living across the country has changed the way I communicate with my parents and sister. And, as has been so clearly demonstrated time and again over the past year or more, clearly living across the country has for SURE changed the way my parents and sister communicate with me.
Before I moved to the East Coast, I had never lived any further than 10 miles from my parents. There were weeks that would go by where we wouldn't see each other, but I seemed to have a need or reason to at least call fairly often. My sister, on the other hand, went more than 4 years without speaking to my father (hot Irish tempers make for long grudges) and she's lived in at least 2 other states. Now, I'm not sure about the quality of information she received when she was "far flung" (I should ask, honestly ... that would probably help things) but getting family news from either parent - or my sister, for that matter - since my East Coast relocation is like pulling teeth.
I do my best to not give my family nothing but health news updates. For starters, there's not a lot to say. I still have Parkinson's. I still have tremors. I'm still on my original medication. Nothing seems to be getting better and, thankfully, nothing seems to be getting worse. I still get migraines, too (as witnessed by a real killer this past weekend) but, thanks to The Awesome Fiance, I will be cared for when they occur. Beyond that, news from me will likely be related to employment, a general "funny story", weather ... typical "so how are things there" kind of conversations.
When I get reports from the family, I get partial news like this - "EJ's daughter is in the hospital undergoing emergency brain surgery" which is followed a week later by "All of EJ's children held a surprise party for him". (How is that possible, I ask, when his youngest is in the hospital? "Oh - she's been home for nearly 5 days now. They're gonna control everything with medicines.") Or I get updates from things I never knew about in the first place - "Good news - Dad's pickup truck just needed to have the spark plugs replaced. Guess that'll teach him to start pricing whole new engines." And sometimes (and most frustrating of all) I get just the middle of a story - "The dentist said that the wisdom tooth extraction went deeper than he thought it would but things will probably go alright."
Now I fully realize that I don't update my loved ones on every belch, hiccup and pimple I experience. AND I also fully recognize that there's little reason for me to be kept "in the loop" about every detail from my extended loved ones lives because, after all, what can I *DO* about such things from where I live.
That being said, I'd like to believe that I am not thought of as being so fragile that news is being edited to protect me from reality or general daily life. I think there are some things that I have a right to know about, and health matters come right at the top of that list. When we have a family friend whose daughter's health is significantly compromised and you've shared the first part of the story, make sure you tell me how things resolve themselves. If someone is undergoing dental surgery, let me know please because that CAN be serious. I also would like to be informed about animal health because ... well, because I've met said animals and I care about their well-being.
Anyway, for all I'm told about, I still feel as tho' there is much to be shared. I admit to not being known as "the open book" to my family but I believe I am getting better at that. Hopefully the communication lines will not just continue to flow but to become more complete.
Tuesday, March 27, 2012
Friday, March 16, 2012
"Keyboard, tree, calendar, exit, theater!" ...or "How I Became A Lab Rat"
This past Tuesday, I had my "baseline 3 1/2 hour doctors appointment to ensure my overall level of health" before I embark on a 44-week double-blind medication study on the side effects of an already-FDA approved medication for one health issue which MAY (or may not) have benefits towards the treatment of Parkinson's Disease.
This is an unpaid, completely voluntary, fairly non-invasive study which is being conducted on about 300 Parkinson's patients nationally - all of whom are at about the same stage of progression as me. The "fairly non-invasive" part is that you voluntarily give your entire medical history over to a team of doctors, researchers and hospital administrators (whom you may or may not have already met) who study your treatment for nearly a year. If this were an invasive study, it would include medical procedures like spinal taps and such and, call me a wuss, but I already HAVE fuckin' Parkinson's, thankyouverymuch so keep your damn needles the hell away from my back.
(ASIDE: God, please bless the people who voluntarily sign up for invasive studies. Seriously. I've watched someone getting a spinal tap and ... *shudder* ... I can't imagine being totally healthy and going through that kind of pain all in the name of Science.)
My mostly needle-free test consisted of questions about my health, and quizzes of cognition, short-term memory, balance, and an assessment of my current level of Parkinson's. Oh, and a 40-page scratch and sniff test.
Yeah, that part was strangely frustrating. "Here - sniff this." "Ok, that's BBQ" (which triggered my head to think "wow - BBQ would be good for dinner"). Then it was "Now sniff this." "THAT'S a dill pickle." (Great, now I want a dill pickle.) A few I really couldn't tell what the heck they were and so I'd see the choices of what it COULD be and then go from there. These scents are all generated in a fake sort of way (meaning a disclaimer below the "banana" scratch area should read something like "no bananas were harmed in the course of creating this smell"), so the chocolate one smelled NOTHING like actual chocolate ... ... ... says the girl that can still taste the difference between Quik, Hershey's, and Guittard. By the 27th scratch, my fingers smelled like they'd walked through a Las Vegas buffet - and not in a yummy kind of a way.
The researchers took a blood sample (using an extremely thin needle - honestly I didn't feel it at all), a urine sample, and swabbed my mouth - all to get DNA samples to test for any markers of Parkinson's. If they can get enough samples, I guess, they'll be able to find the specific link in the strand and ... I dunno ... alter or remove it for future generations? Anyway, they've got all my "stuff" now ... hey - maybe they can use it to make a new and improved version - Me, 2.0!
The pills I'm taking for the next two weeks are either three capsules of nothing at all, or two capsules of nothing and one with 15mg of the medication being tested. After those two weeks are up, I'll turn in those bottles and get three new bottles - which will either be three capsules of nothing at all or two that each have 15mgs of medication and one that is just a "sugar pill". After two weeks on that, I'll again turn everything in and get three new bottles, which will be all medication or all nothing. This is done so that the body can adjust to the (possible) medication - vs. just tossing 45mg at ya' and saying "so, how do you feel?"
When I took my first dose (in front of the researchers, who then kept me under observation for 45 minutes), I felt like one pill MAY have weighed more than the other two ... but that could absolutely be my mind playing tricks with me, which IS part of a double-blind study in the first place. I was asked how I felt about every five minutes and, after the 3rd time, started coming up with different responses: "I haven't sprouted a tail yet" to "Don't seem to be frothing at the mouth" to "Well I don't FEEL invisible yet". While this may read like I was bothered by the near constant checking in, I was honestly glad that my health was in their hands.
Anyway it's day four on the "possible" medication. No vivid dreams (like what I had when I was on Carbidopa-Levodopa - yikes ... really creepy stuff) and my arm tremor seems about the same - maybe it happens a LITTLE less often (but last week was super stressful at work so it could just be that).
I guess we'll see what the next 43 weeks are like. I note in my Parkinson's Daily Diary when I take my pills, when I eat, and I rate my shaking throughout the day, all of which I show to my doctors and keep it current for my own benefit so, over time, maybe I'll notice a change ... HOPEFULLY for the better.
OH - but one kinda funny thing happened during the course of my visit.
For the short-term memory portion of my tests, each doctor/assistant starts by saying 5 random words for me to remember until I'm asked to repeat them back. So Doctor 1 says "rabbit, scissors, coffee, tulip, crayon" ... and then we talk for about 5-6 minutes and at the end of the conversation, he asks for me to give him three of the words. Then Doctor 2 comes in and says "cheese, shirt, church, velvet, keys" ... and we talk for 5-6 minutes, and they he asks for all 5 of his words. Well THEN Doctor 3 comes in and says "store, cough, sweater, bells, baby" ... and at the end of our talk, he doesn't ask for his words at all! So by the time Doctor 4 comes in, it's all I can do to not shout out "hairdryer, muscle, calm, ocean, paint, army, pencil!" just to get them outta my head. So Doctor 4 asked for just two of his words, but I said "yanno, I'm gonna give you 7 - because Doctor 3 didn't ask for any of his and now they're just screaming to get out." Suffice to say, my short-term memory - and, thus far, my sense of humor - is fine.
And I've checked ... I still don't see a tail.
This is an unpaid, completely voluntary, fairly non-invasive study which is being conducted on about 300 Parkinson's patients nationally - all of whom are at about the same stage of progression as me. The "fairly non-invasive" part is that you voluntarily give your entire medical history over to a team of doctors, researchers and hospital administrators (whom you may or may not have already met) who study your treatment for nearly a year. If this were an invasive study, it would include medical procedures like spinal taps and such and, call me a wuss, but I already HAVE fuckin' Parkinson's, thankyouverymuch so keep your damn needles the hell away from my back.
(ASIDE: God, please bless the people who voluntarily sign up for invasive studies. Seriously. I've watched someone getting a spinal tap and ... *shudder* ... I can't imagine being totally healthy and going through that kind of pain all in the name of Science.)
My mostly needle-free test consisted of questions about my health, and quizzes of cognition, short-term memory, balance, and an assessment of my current level of Parkinson's. Oh, and a 40-page scratch and sniff test.
Yeah, that part was strangely frustrating. "Here - sniff this." "Ok, that's BBQ" (which triggered my head to think "wow - BBQ would be good for dinner"). Then it was "Now sniff this." "THAT'S a dill pickle." (Great, now I want a dill pickle.) A few I really couldn't tell what the heck they were and so I'd see the choices of what it COULD be and then go from there. These scents are all generated in a fake sort of way (meaning a disclaimer below the "banana" scratch area should read something like "no bananas were harmed in the course of creating this smell"), so the chocolate one smelled NOTHING like actual chocolate ... ... ... says the girl that can still taste the difference between Quik, Hershey's, and Guittard. By the 27th scratch, my fingers smelled like they'd walked through a Las Vegas buffet - and not in a yummy kind of a way.
The researchers took a blood sample (using an extremely thin needle - honestly I didn't feel it at all), a urine sample, and swabbed my mouth - all to get DNA samples to test for any markers of Parkinson's. If they can get enough samples, I guess, they'll be able to find the specific link in the strand and ... I dunno ... alter or remove it for future generations? Anyway, they've got all my "stuff" now ... hey - maybe they can use it to make a new and improved version - Me, 2.0!
The pills I'm taking for the next two weeks are either three capsules of nothing at all, or two capsules of nothing and one with 15mg of the medication being tested. After those two weeks are up, I'll turn in those bottles and get three new bottles - which will either be three capsules of nothing at all or two that each have 15mgs of medication and one that is just a "sugar pill". After two weeks on that, I'll again turn everything in and get three new bottles, which will be all medication or all nothing. This is done so that the body can adjust to the (possible) medication - vs. just tossing 45mg at ya' and saying "so, how do you feel?"
When I took my first dose (in front of the researchers, who then kept me under observation for 45 minutes), I felt like one pill MAY have weighed more than the other two ... but that could absolutely be my mind playing tricks with me, which IS part of a double-blind study in the first place. I was asked how I felt about every five minutes and, after the 3rd time, started coming up with different responses: "I haven't sprouted a tail yet" to "Don't seem to be frothing at the mouth" to "Well I don't FEEL invisible yet". While this may read like I was bothered by the near constant checking in, I was honestly glad that my health was in their hands.
Anyway it's day four on the "possible" medication. No vivid dreams (like what I had when I was on Carbidopa-Levodopa - yikes ... really creepy stuff) and my arm tremor seems about the same - maybe it happens a LITTLE less often (but last week was super stressful at work so it could just be that).
I guess we'll see what the next 43 weeks are like. I note in my Parkinson's Daily Diary when I take my pills, when I eat, and I rate my shaking throughout the day, all of which I show to my doctors and keep it current for my own benefit so, over time, maybe I'll notice a change ... HOPEFULLY for the better.
OH - but one kinda funny thing happened during the course of my visit.
For the short-term memory portion of my tests, each doctor/assistant starts by saying 5 random words for me to remember until I'm asked to repeat them back. So Doctor 1 says "rabbit, scissors, coffee, tulip, crayon" ... and then we talk for about 5-6 minutes and at the end of the conversation, he asks for me to give him three of the words. Then Doctor 2 comes in and says "cheese, shirt, church, velvet, keys" ... and we talk for 5-6 minutes, and they he asks for all 5 of his words. Well THEN Doctor 3 comes in and says "store, cough, sweater, bells, baby" ... and at the end of our talk, he doesn't ask for his words at all! So by the time Doctor 4 comes in, it's all I can do to not shout out "hairdryer, muscle, calm, ocean, paint, army, pencil!" just to get them outta my head. So Doctor 4 asked for just two of his words, but I said "yanno, I'm gonna give you 7 - because Doctor 3 didn't ask for any of his and now they're just screaming to get out." Suffice to say, my short-term memory - and, thus far, my sense of humor - is fine.
And I've checked ... I still don't see a tail.
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