Let me just come right out and say it: At what point do I tell my new manager that I have early-onset Parkinson's?
I was diagnosed last year and so my manager and I came to terms with the diagnosis about 2 hours apart. I was diagnosed, I cried, I went back to work, closed her door and cried some more. It wasn't that she and I were particularly close but I needed to explain myself (it was OBVIOUS I'd been crying) and I knew she had a background in medicine. Honestly if she hadn't been in her office, I probably would have still closed her door and cried but, since she was there, it would have been awkward to not say SOMETHING.
Well since that time, the very small office I'm in has undergone a lot of changes. One person left, replaced by another. That was in December so I've had time to get comfortable both with my diagnosis AND with this person plus I don't report to them so telling them what was up with me was no big deal. After my manager left, I had to tell someone higher up the food chain about my diagnosis so they'd realize why I had doctor appointments that lasted all day. I did so via email, knowing the less I said, the better the chance the message would be read.
But now we have a new manager in our office, and I'm conflicted. I want to show this person all that I'm capable of before I ... label myself. While yes, it's true that my work methods have changed very little post-PD diagnosis, there ARE things that I do differently or cannot do at all and I'd like to address that as comfortably as possible for both she and I.
I can't, for instance, write notes during meetings. Which can be a bummer for me but the meetings I tend to go to involve the others in my office and they all are aware that I can't take notes and why. When I do write something down - even my own name - I write s-l-o-w-l-y. Almost as though I'm sounding out the letters. And my left hand guides my right and that just ... well it looks weird. Oh - and I use a special split-base pen at work that (unfortunately) attracts attention because it's very space-age looking. (Presumably it makes it easier for me to write. I dunno ... the jury is still out on that one.) Even my typing has changed, with my left hand occasionally resetting my right.
So it makes sense I address this before she notices and asks a question where she'd feel embarrassed by when I say "no, I'm not illiterate - I have Parkinson's" or something along those lines. I don't want my not addressing it to feel like I'm hiding anything. I'm not. I've been very open in talking about this to lots of folks around the work place. Some have seen my daily Parkinson's log or my pen and asked what's up. And with others, I've explained why I don't trust myself in walking down three flights of stairs before they even ask. I'm fine with it. Heck, it's not my choice for sure - but it could be worse so I may as well be alright with it. Once folks see I'm ok discussing it, questions are more easily addressed and any awkwardness tends to go away. (I've had a few folks admit afterward that they'd noticed I was holding my arm strangely or that I walked with a specific gate that made them wonder what was up. I'm always amazed when I'm told this - I think of myself as being stealthy but clearly I am not.)
On the other end, I don't want this to be the first of the impressions I make with my new manager, either. I'd rather have the opportunity to accomplish a few things before she looks at me and has the word "Parkinson's" spring to mind. It's not that I'm afraid she won't be ok with it or that she may hold it against me ... but let's be honest, once you know something like that about a person, you can't UNknow it.
And then there's how to have that discussion. Like - what does that look like? Do I walk in, close the door, and say "you should probably know ..." That seems too serious to me. I can hear myself saying something more like "in case you're wondering" ... but geez, that sounds REALLY self-absorbed.
I dunno. I don't have it worked out yet. I hope I figure this out.
Wednesday, April 18, 2012
Wednesday, April 11, 2012
Things I Hear That Are Hard To Swallow
Yesterday was my second in-office review since I started this Phase II test. (All is well and I still show no signs of a tail.) Dr. M did the physical review/tests himself, which is unusual. His time is typically gobbled up by reviews and meetings and conferences and patients. I suspect he only had time on his hands because I was the first patient in the office.
After going through the usual dog and pony tricks that I'm used to (finger touches, foot bounces, repeating movement quickly for 30 seconds, balance testing,etc), he wrote down his opinions on the official paperwork. Sensing he wasn't rushed, I mentioned that I'd read, via a Fox Trial Finder Update, that the Neupro patch had (once again) been approved by the FDA. Dr. M perked up and his whole expression changed. He became quite animated as he expressed his excitement when he'd heard this news a few weeks before it was publically announced.
BACKGROUND: Neupro is a pharmaceutical patch that was originally approved by the FDA in 2007. It was - and still is - the only extended-release dopamine agonist (ER DA) available as a patch. It was created to treat symptoms associated with both early AND advanced-stage Parkinson's. The specific benefit of Neupro is that it is able to maintain a constant level of drug throughout the length of an entire day. This means patients using Neupro would likely enjoy longer "on" periods, even while sleeping.
The FDA pulled it from the US markets in early 2008 after complaints surfaced that the medicated-gel coating the patch was using was granulated during the manufacturing process, which prevented proper dosing of the medicine. So the manufacturer adjusted their methods, and had to go through re-testing of their product (which they already knew was working because no other countries pulled it from their markets). The whole thing took four years to re-create and test. But, now that the hurdle has been cleared, it will reappear in the US this July.
Neupro was Dr. M's first choice of ER DA and he told me how he had to break the news to his patients that this medicine - the stuff that was helping them sleep calmly at night, that every patent was able to use no matter the level of their Parkinson's affliction - was being pulled in the US, and why. He noted that all agreed the US FDA did the right thing by pulling it ... but this was the only ER DA available as a patch, so it was a crushing thing to say to those he was treating.
Why, you may ask, is that such a big deal?
Because along with maybe screwing up your balance and/or sense of smell, along with maybe causing you to "freeze" and/or shake uncontrollably (I have a GREAT vein in the inside of my right arm - but it's useless to me now because that arm shakes. Needles and twitching are never a good equation.), along with maybe making you stutter and/or drool, Parkinson's can take away the ability to swallow. Thereby eliminating your ability to take pills.
Yeeaaaaaaah. That's .... well .......... that's just a magnificent kind of evil.
I've always thought of myself as being a very lucky person. It's strange to think of yourself as being lucky because there will still be a way for you to be medicated if you can no longer swallow.
After going through the usual dog and pony tricks that I'm used to (finger touches, foot bounces, repeating movement quickly for 30 seconds, balance testing,etc), he wrote down his opinions on the official paperwork. Sensing he wasn't rushed, I mentioned that I'd read, via a Fox Trial Finder Update, that the Neupro patch had (once again) been approved by the FDA. Dr. M perked up and his whole expression changed. He became quite animated as he expressed his excitement when he'd heard this news a few weeks before it was publically announced.
BACKGROUND: Neupro is a pharmaceutical patch that was originally approved by the FDA in 2007. It was - and still is - the only extended-release dopamine agonist (ER DA) available as a patch. It was created to treat symptoms associated with both early AND advanced-stage Parkinson's. The specific benefit of Neupro is that it is able to maintain a constant level of drug throughout the length of an entire day. This means patients using Neupro would likely enjoy longer "on" periods, even while sleeping.
The FDA pulled it from the US markets in early 2008 after complaints surfaced that the medicated-gel coating the patch was using was granulated during the manufacturing process, which prevented proper dosing of the medicine. So the manufacturer adjusted their methods, and had to go through re-testing of their product (which they already knew was working because no other countries pulled it from their markets). The whole thing took four years to re-create and test. But, now that the hurdle has been cleared, it will reappear in the US this July.
Neupro was Dr. M's first choice of ER DA and he told me how he had to break the news to his patients that this medicine - the stuff that was helping them sleep calmly at night, that every patent was able to use no matter the level of their Parkinson's affliction - was being pulled in the US, and why. He noted that all agreed the US FDA did the right thing by pulling it ... but this was the only ER DA available as a patch, so it was a crushing thing to say to those he was treating.
Why, you may ask, is that such a big deal?
Because along with maybe screwing up your balance and/or sense of smell, along with maybe causing you to "freeze" and/or shake uncontrollably (I have a GREAT vein in the inside of my right arm - but it's useless to me now because that arm shakes. Needles and twitching are never a good equation.), along with maybe making you stutter and/or drool, Parkinson's can take away the ability to swallow. Thereby eliminating your ability to take pills.
Yeeaaaaaaah. That's .... well .......... that's just a magnificent kind of evil.
I've always thought of myself as being a very lucky person. It's strange to think of yourself as being lucky because there will still be a way for you to be medicated if you can no longer swallow.
Friday, April 6, 2012
I'm Aware That It's April
April, it seems, is National Parkinson's Awareness Month.
Huh. I must have missed the memo.
The Awesome Fiancé and I were watching TV last night when Julianna Margulies and Michael J. Fox appeared on our screen. They had a brief message, announcing it was National Parkinson's Awareness Month and, basically, encouraging folks to get involved.
I noticed a couple of things. First was that the message was delivered 98% by Ms. Marguiles, with Mr. Fox barely saying a word. He sat remarkably still which I found strangely nice to see. Of course I knew why he was in the announcement, but couldn't figure out why Ms. Marguiles was in it. Was she a patient too? Was there a connection I was missing? I made a note to search this the next day.
The second thing I noticed was that the minute the words "Awareness Month" were spoken, The Awesome Fiancé immediately looked over at me, almost by instinct. Rather than meet his gaze, I gave a half-hearted grin and said out loud "oh joy! Look - I get a whole month of awareness!", though - truth be told - I wasn't really bothered by it. Basically any press given towards PD is, honestly, a good thing so - sure - bring it on.
Today I sat down and searched for the Marguiles Parkinson's connection. It seems Mr. Fox is appearing on her current show where he plays a character similarly diagnosed as he has been. Intrigued, I watched the two minute long interview from the show.
Which was a mistake.
In the interview, Mr. Fox talks about how he downplays some of the symptoms he deals with when necessary. I think that's what he said anyway. It was hard to concentrate on his words because he was in a constant state of unfocused motion.
Now I know why he goes on camera this way. As I've shared with my family and co-workers, he purposely goes off his Carbidopa-Levodopa prior to giving interviews. He does this because by not taking his medication, he guarantees he'll be "off" and dealing with dyskinesia, which are the uncontrolled movements we all see.
This planned non-medicated strategy sounds a little screwy but consider this: If you're interviewing someone with a debilitating, long-term, incurable disease and they look tan and healthy and "normal" ... well who's gonna write a check to support THAT foundation, right? As twisted as it seems, if you're talking to someone who is "ill", it is easier for society to sympathize, to write that check, to look for ways to help if they can actually "SEE" the disease and all that it comes with.
Don't believe me? Pay attention the next time you see an ad for any "save the animals" group. Do they show a much-loved and well-groomed dog being walked around the ring at the Westminster Kennel Club Dog Show? No of course not. They show you some sad-faced mutt sitting alone in a tiny cage at a shelter. In this contest, the mutt wins the prize every single time.
Having learned of April being "PD" Awareness month, I also decided to read the text of the Senate Resolution which, apparently, was approved and passed in March 2010. It reads:
Whereas Parkinson's disease is the second most common neurodegenerative disease in the United States, second only to Alzheimer's disease; (That was news to me - I figured it'd be in the top 5 but didn't know it was #2.)
Whereas even though there is inadequate comprehensive data on the incidence and prevalence of Parkinson's disease, as of 2010, it is estimated that the disease affects over 1,000,000 people in the United States; (This was NOT news to me. As my doctor's and I have discussed my own case, we've agreed that I probably was showing signs of tremor as early as 2007. And, honestly, I probably would've waited on seeing a doctor about "my shake" even longer if it wasn't for The Awesome Fiancé becoming more and more aware of my trying to hide it.)
Whereas although research suggests the cause of Parkinson's disease is a combination of genetic and environmental factors, the exact cause and progression of the disease is still unknown; (Also not news to me. My PD is just another "health hiccup" I have ... just like me being the only family member who doesn't have allergies, or the only one who gets migraines.)
Whereas there is no objective test for Parkinson's disease and the rate of misdiagnosis can be high; (Yeah - you may recall that I started out with "essential tremor", but that wasn't the fault of my GP. He likely doesn't see much Parkinson's out of the blue like mine.)
Whereas symptoms of Parkinson's disease vary from person to person and include tremor, slowness, difficulty with balance, swallowing, chewing, and speaking, rigidity, cognitive problems, dementia, mood disorders, such as depression and anxiety, constipation, skin problems, and sleep disruptions; (Please please please God - give me shakes, take away my ability to write long-hand, give me acne, but don't mess with my head or my bodily functions.)
Whereas medications mask some symptoms of Parkinson's disease for a limited amount of time each day, often with dose-limiting side-effects; ("For now", she wrote confidently.)
Whereas ultimately the medications and treatments lose their effectiveness, generally after 4 to 8 years, leaving the person unable to move, speak, or swallow; (God already knows how I feel about this.)
Whereas there is no cure, therapy, or drug to slow or halt the progression of Parkinson's disease; ("For now", she wrote even more emphatically.)
Whereas increased education and research are needed to help find more effective treatments with fewer side effects and, ultimately, an effective treatment or cure for Parkinson's disease; (which reminds me that my follow-up appointment for the trial I'm participating in is next week so I'll need to bring my unused medication with me.)
Whereas the Federal Government, through the National Institutes of Health, the Department of Defense Neurotoxin Exposure Treatment Parkinson's Research Program, the Veterans Affairs Parkinson's Disease Research, Education and Clinical Centers, and other agencies, supports vital work to better understand Parkinson's disease and to find new treatments; (as they damn well should.)
and
Whereas the Parkinson's community will gather in Central Park on April 24, 2010, for the Parkinson's Unity Walk, an annual gathering inspiring people with Parkinson's, their friends, and their families: (This year it'll be on the 28th, but I'll pass, thanks. I'm just not a "community joiner" type.)
Now, therefore, be it resolved, that the Senate--
(1) supports the designation of April as Parkinson's Awareness Month;
(2) supports the goals and ideals of Parkinson's Awareness Month;
(3) continues to support research to find better treatments, and eventually, a cure for Parkinson's disease;
(4) recognizes the people living with Parkinson's who participate in vital clinical trials to advance our knowledge of this disease; and
(5) commends the dedication of local and regional organizations, volunteers, and millions of Americans across the country working to improve the quality of life of persons living with Parkinson's disease and their families.
So while every cause has their rubber bracelets (ours says "Move to beat Parkinson's") and their official cause color (ours is a nice shade of blue), it seems the Senate gave me and my fellow ... "movers and shakers?" ... April.
In spite of T. S. Eliot starting The Waste Land by writing "April is the cruelest month", I rather like April. Historically, very good things have happened to me in this month, most notably April 22nd in 2009. Yes, I was already showing signs of Parkinson's ... and somehow, that was not even among the top fifty things I was aware of.
Huh. I must have missed the memo.
The Awesome Fiancé and I were watching TV last night when Julianna Margulies and Michael J. Fox appeared on our screen. They had a brief message, announcing it was National Parkinson's Awareness Month and, basically, encouraging folks to get involved.
I noticed a couple of things. First was that the message was delivered 98% by Ms. Marguiles, with Mr. Fox barely saying a word. He sat remarkably still which I found strangely nice to see. Of course I knew why he was in the announcement, but couldn't figure out why Ms. Marguiles was in it. Was she a patient too? Was there a connection I was missing? I made a note to search this the next day.
The second thing I noticed was that the minute the words "Awareness Month" were spoken, The Awesome Fiancé immediately looked over at me, almost by instinct. Rather than meet his gaze, I gave a half-hearted grin and said out loud "oh joy! Look - I get a whole month of awareness!", though - truth be told - I wasn't really bothered by it. Basically any press given towards PD is, honestly, a good thing so - sure - bring it on.
Today I sat down and searched for the Marguiles Parkinson's connection. It seems Mr. Fox is appearing on her current show where he plays a character similarly diagnosed as he has been. Intrigued, I watched the two minute long interview from the show.
Which was a mistake.
In the interview, Mr. Fox talks about how he downplays some of the symptoms he deals with when necessary. I think that's what he said anyway. It was hard to concentrate on his words because he was in a constant state of unfocused motion.
Now I know why he goes on camera this way. As I've shared with my family and co-workers, he purposely goes off his Carbidopa-Levodopa prior to giving interviews. He does this because by not taking his medication, he guarantees he'll be "off" and dealing with dyskinesia, which are the uncontrolled movements we all see.
This planned non-medicated strategy sounds a little screwy but consider this: If you're interviewing someone with a debilitating, long-term, incurable disease and they look tan and healthy and "normal" ... well who's gonna write a check to support THAT foundation, right? As twisted as it seems, if you're talking to someone who is "ill", it is easier for society to sympathize, to write that check, to look for ways to help if they can actually "SEE" the disease and all that it comes with.
Don't believe me? Pay attention the next time you see an ad for any "save the animals" group. Do they show a much-loved and well-groomed dog being walked around the ring at the Westminster Kennel Club Dog Show? No of course not. They show you some sad-faced mutt sitting alone in a tiny cage at a shelter. In this contest, the mutt wins the prize every single time.
Having learned of April being "PD" Awareness month, I also decided to read the text of the Senate Resolution which, apparently, was approved and passed in March 2010. It reads:
Whereas Parkinson's disease is the second most common neurodegenerative disease in the United States, second only to Alzheimer's disease; (That was news to me - I figured it'd be in the top 5 but didn't know it was #2.)
Whereas even though there is inadequate comprehensive data on the incidence and prevalence of Parkinson's disease, as of 2010, it is estimated that the disease affects over 1,000,000 people in the United States; (This was NOT news to me. As my doctor's and I have discussed my own case, we've agreed that I probably was showing signs of tremor as early as 2007. And, honestly, I probably would've waited on seeing a doctor about "my shake" even longer if it wasn't for The Awesome Fiancé becoming more and more aware of my trying to hide it.)
Whereas although research suggests the cause of Parkinson's disease is a combination of genetic and environmental factors, the exact cause and progression of the disease is still unknown; (Also not news to me. My PD is just another "health hiccup" I have ... just like me being the only family member who doesn't have allergies, or the only one who gets migraines.)
Whereas there is no objective test for Parkinson's disease and the rate of misdiagnosis can be high; (Yeah - you may recall that I started out with "essential tremor", but that wasn't the fault of my GP. He likely doesn't see much Parkinson's out of the blue like mine.)
Whereas symptoms of Parkinson's disease vary from person to person and include tremor, slowness, difficulty with balance, swallowing, chewing, and speaking, rigidity, cognitive problems, dementia, mood disorders, such as depression and anxiety, constipation, skin problems, and sleep disruptions; (Please please please God - give me shakes, take away my ability to write long-hand, give me acne, but don't mess with my head or my bodily functions.)
Whereas medications mask some symptoms of Parkinson's disease for a limited amount of time each day, often with dose-limiting side-effects; ("For now", she wrote confidently.)
Whereas ultimately the medications and treatments lose their effectiveness, generally after 4 to 8 years, leaving the person unable to move, speak, or swallow; (God already knows how I feel about this.)
Whereas there is no cure, therapy, or drug to slow or halt the progression of Parkinson's disease; ("For now", she wrote even more emphatically.)
Whereas increased education and research are needed to help find more effective treatments with fewer side effects and, ultimately, an effective treatment or cure for Parkinson's disease; (which reminds me that my follow-up appointment for the trial I'm participating in is next week so I'll need to bring my unused medication with me.)
Whereas the Federal Government, through the National Institutes of Health, the Department of Defense Neurotoxin Exposure Treatment Parkinson's Research Program, the Veterans Affairs Parkinson's Disease Research, Education and Clinical Centers, and other agencies, supports vital work to better understand Parkinson's disease and to find new treatments; (as they damn well should.)
and
Whereas the Parkinson's community will gather in Central Park on April 24, 2010, for the Parkinson's Unity Walk, an annual gathering inspiring people with Parkinson's, their friends, and their families: (This year it'll be on the 28th, but I'll pass, thanks. I'm just not a "community joiner" type.)
Now, therefore, be it resolved, that the Senate--
(1) supports the designation of April as Parkinson's Awareness Month;
(2) supports the goals and ideals of Parkinson's Awareness Month;
(3) continues to support research to find better treatments, and eventually, a cure for Parkinson's disease;
(4) recognizes the people living with Parkinson's who participate in vital clinical trials to advance our knowledge of this disease; and
(5) commends the dedication of local and regional organizations, volunteers, and millions of Americans across the country working to improve the quality of life of persons living with Parkinson's disease and their families.
So while every cause has their rubber bracelets (ours says "Move to beat Parkinson's") and their official cause color (ours is a nice shade of blue), it seems the Senate gave me and my fellow ... "movers and shakers?" ... April.
In spite of T. S. Eliot starting The Waste Land by writing "April is the cruelest month", I rather like April. Historically, very good things have happened to me in this month, most notably April 22nd in 2009. Yes, I was already showing signs of Parkinson's ... and somehow, that was not even among the top fifty things I was aware of.
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