It's been a month of "just" being on my Selegiline. Each twitch, quiver, shake, shiver ... each cramp or tilt or swerve makes me wonder ... is this new? Is this a decline? Is this normal ... or is this MY normal? Am I losing weight because Winter is fading and I'm eating less or am I losing weight because I'm eating less due to a loss of appetite (a PD Symptom)? For crying out loud - isn't ok to just not be hungry anymore?!?
There's no way to know. Imagine if, once a week, you had to report in depth on ...... how your teeth felt. Are they feeling cleaner today than last week? Are the spaces in between the same or different? Is your jaw tighter than it was last Tuesday? Do things line up the same?
For my PD, that's kind of how it feels when I notice, for instance, that I sit in my chair with my feet flat on the floor and use them to swing my chair left, then right, then left. Is this a new thing I'm doing? Am I doing it because I'm AWARE I want to be doing it - or is this a new symptom? Did I do this last month?
In happier news, the one driving me crazy with all this is me. The Awesome Husband is either keeping his concerns to himself and/or realizes that anything he's noticing about me I've already noticed and am already wondering about. Our daily life is wonderfully, marvelously un-large-eventful. My diagnosis does not consume either of us ... it just simply is there. It isn't ME. It's a small part of who I am today and may be a part of who I will become ... but it's not now and will never be all of me. It is also not us.
I will always ... WE will always ... I dearly hope, be more.
Friday, February 22, 2013
Wednesday, January 23, 2013
...And Now The Real Test Begins.
I visited, for the last time for awhile, Dr. M yesterday. It's hard to believe that I've been in his testing program for 44 weeks already.
Dr. M is part of a group of Neurologists conducting a Phase II double-blind study of an already-FDA approved medication that may - or may not - slow or even halt the progression of Parkinson's. Dr. M's recruitment for the study went very well, but a few of the other nationally-based doctors didn't have as much luck so, while I'm done with the testing period and interested to know what conclusions have been drawn, it will likely be another year or more before that happens. And I likely will never know if I was even ON medication. Since it's a double-blind study, neither doctor nor patient are told if medication has been given or if it's a bottle of sugar pills. After Dr. M submits his findings from the study, he'll be told which group took what. Honestly, I'm not all that interested to know which group of participants I was in. For me, the real test has just begun.
See the study had various parameters to it that meant only a small percentage of PD patients could be involved. You had to have received a PD diagnosis, not yet be taking Carbidopa/Levodopa (C/L), and be taking Selegiline for more than 8 weeks but less than 8 months. Those don't sound like 3 large hurdles but, in reading through past entries here, I realize it took me 3 years to even decide to get my tremor looked at by a doctor. And then I went to a Neurologist a couple of months later. And, a month after that, I got my second opinion. At that stage, I was on C/L (used to confirm diagnosis only) and was still absorbing the diagnosis itself. I started taking Selegiline in November and Dr. M timed my trial to start about 2 months later, so that I'd be squarely in the 3-hurdle window. A lot of PD patients don't have access to Neurologists who are actively seeking and testing new treatments, so *if* they researched trials on their own (which I'm told about 80% of them do), there's a high likelihood they would already be outside the 8-month parameter. In fact, if I hadn't saught out that second opinion, I wouldn't have known about the trial because my own Neurologist isn't really active in the "trial and testing" community of physicians. (That may read as a criticism, but it isn't. Her employer is not a "teaching hospital", so she's not required - and possibly isn't allowed - to run trials and tests of new treatment methods.)
What all ^^that^^ means for me is that in the ~64 weeks since my diagnosis, it's possible that I've spent 44 of them on medication which slowed or halted my PD journey, and and additional 4 weeks on C/L, which masked my PD completely. Or, using the same math, I only know what my non-medicated standard rate of progression is based on 4 months - a time period which included my (and my awesome husband's) absorption of my diagnosis, a few frantic weeks of MRIs and EKGs and blood work and telling my immediate family and my coworkers and OH YEAH getting engaged(!!) and planning Thanksgiving for ~14 family members and dealing with the holidays and shipping packages and ... well, honestly I can't say it occurred to me to note every little twitch 'cause we were just a tiny bit busy. And I didn't realize that I'd be part of a testing pool so yeah, those 4 months were VERY much a blur of activity.
So my real test starts today. I awoke and got dressed and ready for work and it dawned on me that I now take 3 less pills each day. (Yes, I still take 13 pills in the morning and 4 at lunchtime but 17 IS less than the 20 I was taking so hey, it's a little victory but it's still a victory!) Today I am aware - maybe a little over-aware - of each twitch and shake and motion I make. It is, of course, about 50 degrees in the office and I'm practically sitting with the space heater in my lap, but at that temperature, we're ALL shaking just trying to keep warm.
But today I'm "only" on Selegiline for my Parkinson's ... so what's my progression rate and how "bad" am I?
Time will tell.
Dr. M is part of a group of Neurologists conducting a Phase II double-blind study of an already-FDA approved medication that may - or may not - slow or even halt the progression of Parkinson's. Dr. M's recruitment for the study went very well, but a few of the other nationally-based doctors didn't have as much luck so, while I'm done with the testing period and interested to know what conclusions have been drawn, it will likely be another year or more before that happens. And I likely will never know if I was even ON medication. Since it's a double-blind study, neither doctor nor patient are told if medication has been given or if it's a bottle of sugar pills. After Dr. M submits his findings from the study, he'll be told which group took what. Honestly, I'm not all that interested to know which group of participants I was in. For me, the real test has just begun.
See the study had various parameters to it that meant only a small percentage of PD patients could be involved. You had to have received a PD diagnosis, not yet be taking Carbidopa/Levodopa (C/L), and be taking Selegiline for more than 8 weeks but less than 8 months. Those don't sound like 3 large hurdles but, in reading through past entries here, I realize it took me 3 years to even decide to get my tremor looked at by a doctor. And then I went to a Neurologist a couple of months later. And, a month after that, I got my second opinion. At that stage, I was on C/L (used to confirm diagnosis only) and was still absorbing the diagnosis itself. I started taking Selegiline in November and Dr. M timed my trial to start about 2 months later, so that I'd be squarely in the 3-hurdle window. A lot of PD patients don't have access to Neurologists who are actively seeking and testing new treatments, so *if* they researched trials on their own (which I'm told about 80% of them do), there's a high likelihood they would already be outside the 8-month parameter. In fact, if I hadn't saught out that second opinion, I wouldn't have known about the trial because my own Neurologist isn't really active in the "trial and testing" community of physicians. (That may read as a criticism, but it isn't. Her employer is not a "teaching hospital", so she's not required - and possibly isn't allowed - to run trials and tests of new treatment methods.)
What all ^^that^^ means for me is that in the ~64 weeks since my diagnosis, it's possible that I've spent 44 of them on medication which slowed or halted my PD journey, and and additional 4 weeks on C/L, which masked my PD completely. Or, using the same math, I only know what my non-medicated standard rate of progression is based on 4 months - a time period which included my (and my awesome husband's) absorption of my diagnosis, a few frantic weeks of MRIs and EKGs and blood work and telling my immediate family and my coworkers and OH YEAH getting engaged(!!) and planning Thanksgiving for ~14 family members and dealing with the holidays and shipping packages and ... well, honestly I can't say it occurred to me to note every little twitch 'cause we were just a tiny bit busy. And I didn't realize that I'd be part of a testing pool so yeah, those 4 months were VERY much a blur of activity.
So my real test starts today. I awoke and got dressed and ready for work and it dawned on me that I now take 3 less pills each day. (Yes, I still take 13 pills in the morning and 4 at lunchtime but 17 IS less than the 20 I was taking so hey, it's a little victory but it's still a victory!) Today I am aware - maybe a little over-aware - of each twitch and shake and motion I make. It is, of course, about 50 degrees in the office and I'm practically sitting with the space heater in my lap, but at that temperature, we're ALL shaking just trying to keep warm.
But today I'm "only" on Selegiline for my Parkinson's ... so what's my progression rate and how "bad" am I?
Time will tell.
Wednesday, November 21, 2012
Full of Thanks
Tomorrow is a day to remember all the graces, the gestures, the kindnesses of all sizes, and to be thankful.
While I'm not a pie-eyed, rainbows and unicorns, "all the world is wonderful all the time" type, I'm well aware that my outlook, in general, is silver-lining lined. Heck I'm actually thankfull my tire blew out when and where it did because it was followed by general niceness by lots of folks.
I believe in "Thank You". I believe in smiling. I believe in being gracious, if at all possible. Some days it takes a LOT of energy to be gracious and even just to smile. I know that. I'm a realist.
My health did NOT turn out as I'd ever thought it would, but I'm thankful that, since I have Parkinson's, I at least have access to the health professionals who help care for me. My career did NOT turn out as I thought it would, but this path opened up so many other doors for me.
Last week, (and now I'm crying) last week I made a pledge and sealed a life-long bond.
Hell yes, I'm thankful.
Take a minute. Stand up. Listen.
Give thanks.
It is SO worth the energy.
While I'm not a pie-eyed, rainbows and unicorns, "all the world is wonderful all the time" type, I'm well aware that my outlook, in general, is silver-lining lined. Heck I'm actually thankfull my tire blew out when and where it did because it was followed by general niceness by lots of folks.
I believe in "Thank You". I believe in smiling. I believe in being gracious, if at all possible. Some days it takes a LOT of energy to be gracious and even just to smile. I know that. I'm a realist.
My health did NOT turn out as I'd ever thought it would, but I'm thankful that, since I have Parkinson's, I at least have access to the health professionals who help care for me. My career did NOT turn out as I thought it would, but this path opened up so many other doors for me.
Last week, (and now I'm crying) last week I made a pledge and sealed a life-long bond.
Hell yes, I'm thankful.
Take a minute. Stand up. Listen.
Give thanks.
It is SO worth the energy.
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