I don't wanna live forever
When the sky is full of little holes
Exploding as they take my picture
Let's explode
The day draws near now, so I've had a lot on my mind. I've reached an emotional place that I haven't been to since the time when I wrote this post. You may feel the death metaphor is recycled, but there really is no turning back this time.
For the past few months, I've been working on what will ultimately be a highly visible project. My participation is still anonymous, but I think it will light the fuse on the charges I set earlier this year. Enough people will see it who know just enough of the few people I told, or know just enough of the details of my story to put the pieces together. I have to think that those who have been paying attention will find little surprise in my identity, but this will definitely be the end of my pseud for all intents and purposes. I'm going to have to change the masthead because it won't be so secret anymore.
That the project's release coincides with the annual Society for Neuroscience meeting is extremely intimidating. I am really self conscious at meetings because I imagine there are people who can spot something off with me from a mile away. In reality, I'm sure 99.9% of people really don't give a rat's ass, but believe me it's always in the back of my head.
Anyway, I'll be at SFNBanter. I shouldn't be too hard to spot - I'll be the one trying not to look gimpy. Say hello if you like. I'm happy to talk.
Hit "SELF DESTRUCT"
It's marked especially
It's easy to read
We'll light one up and celebrate our disease
The title and first lyric are from the song "Let's Explode" by Clem Snide. The second lyric is from "Cadmium" by Superchunk.
ReplyDelete"I'll be the one trying not to look gimpy."
ReplyDelete*facepalm*
I like that you value dexterity, but point out that 'good hands' are not about that. I recently changed labs because my previous PI left for another university (*sob*). I'm not sure if he had P, or if it was a similar set of symptoms, but he had a very notable tremor in his hands that was sometimes fairly severe. You know what? The man could do the most delicate dissections, even going from a hindlimb muscle all the way to expose the DRG for painstaking electrophysiology work.
With a P-like tremor.
So screw anybody who thinks bench work has to suffer. Like the blog. Might see you on Twitter. :)
Everyone's got his/her little secrets. Let your science speak. Attaching too much sentimental value to your science eventually is going to hurt you as a scientist.
ReplyDeleteMy son will be attending the same conference this weekend. he is studying the new major, neuropsycology at UT Knoxville. His grandfather had Parkinsons for many years, and fought the good fight. His mind was sharp as a tack. he began two separate businesses during that time, and invented a product that will likely take off into production soon. Parkinsons did not get him, cancer did. He wouldn't allow the Parkinsons to get him. He had Deep brain Stimulation surgery, two times, one for each hemisphere due to his advanced age. The results immediately afterwards were nothing less than amazing. If the stomach cancer had not invaded only 6 weeks post op, I am sure the stimulation would have presented remarkable results.
ReplyDeleteMy young son, for one, would likely very much like to meet you. His brain amazes me sometimes. He switched from a double major of aeronautical engineering /physics to neuroscience/neuropsychology, a new undergrad major put into place while he has been in undergrad school at UTK. A person of strength and devotion like yourself is a gold mine of motivation. I hope he has the chance to meet you.
Hit "SELF DESTRUCT"
ReplyDelete"It's marked especially
It's easy to read
We'll light one up and celebrate our disease"
This quote hit me hard. My father was diagnosed with PD at 45 years old. He is now 66. Like you, he hid his disease from his colleges for 10 - 15 years. He was finally forced to reveal his diagnosis when a female co-worked expressed fear regarding my fathers shaking during a heated "business meeting." At the time, my father's motor symptoms would become exaggerated when he was feeling nervous or anxious. His co-worker interpreted his shaking as threatening, as though he was so worked up he was shaking and she feared she may get "hit" or something. It was ridiculous as my father was a gentle man then.
After my father turned 60, the PD started to manifest itself by causing extreme behavioral changes in my father. He suddenly became addicted to gambling and "scratch-offs" and engaged in other compulsive and dangerous behaviors. Prior to this time, he was never much of a gambler, drinker, drug user, etc and he regularly discouraged my sister and I from making impulsive decisions. He was not compulsive at all, certainly not to the point that it ruined his life.
In the last 6 years he has hired prostitutes, gambled away his retirement savings, and refuses any intervention our family has tried to offer. My mother ended up leaving him. I cannot be around him anymore because he fights with me when I bring up any topic other than "the weather." I don't understand him, don't know how to get help in regard to his behavior, and his doctors are not supportive and don't listen to our cries for help, they constantly cite patient-doctor confidentiality. Often I cannot tell what is a PD related symptom and what is a "real" decision he's making. He often falls prey to scams and con-artist types.
I hate PD because it has made me hate my father and has ruined our small family. I hate my father because he seems to use the disease to seek sympathy and to avoid taking responsibility for his actions. He refuses to change or even ask his Dr.s to review his meds.
I'm sure you don't want to read a thousand sob stories and I'm sure you don't want to become the new "face" of PD, but I think, no I KNOW, that there is a large emotional change associated with PD and with the side effects of the PD meds. The behavioral changes are the most damaging and have ruined many families according to other accounts I have read and heard. I feel these symptoms/aspects of the disease are not talked about enough.
I appreciate your prospective and I ask you to try not to intellectualize the disease and your experience to the maximum. Take the next few decades to enjoy and appreciate your loved ones. Build good relationships with them now so that if you become and unrecognizable person they will remember who you really are and perhaps won't feel as confused as my family does. Don't bury yourself in work like my father did... A fellow nameless scientist.
I am a research scientist/professor with PD, diagnosed about 4 years ago. Sounds like you know that the compulsive behavior in which your father engages may be a side effect of dopamine agonists (e.g., Mirapex) rather than PD itself, right? Since I have a "bipolar diathesis" my PD doc won't prescribe this class of meds to me at all. Also: I don't understand the 'doctor patient confidentiality' issue about which you complain. That confidentiality means that his docs can't talk to YOU about his treatment without his permission. It doesn't mean that you are forbidden from telling THEM about what you observe.
DeleteI have Parkinson's and recently developed a compound that breaks up alpha-synuclein clusters and stops the progression of the disease. Send an email to donmccammon@gmail.com and I will send a paper I wrote recently.
ReplyDeleteDon McCammon
I read your article in Nature. I was moved and intrigued. Your discussion of the intersection of the physiological and the philosophical aspects of "will" in PD is intriguing. I'm surprised more people don't pick up on it. PD requires exquisite problem solving to follow through on intention. It is imperative for PWPs and the PD community to make as many worthwhile tools available for such challenges as possible.
ReplyDeleteYou mention losing your ability to interact with the world. PD works very hard to separate the individual from the greater social environment. Despite well-meaning projects and therapies there is still inadequate attention paid to keeping PWPs integrated within society. Alone time is fine, but staying in touch is vital to coping with PD in the long run.