The Michael J Fox foundation has put together a tremendous study to look for something in your body that changes as Parkinson's advances. A biomarker.
PPMI - Parkinson's Progression Markers Initiative -(link attached) You should look into doing this - even if you're reading this and don't have Parkinson's - they need you.
So as you probably figured out, I decided to join the trial. If you read my previous posts (you did, right?) you know I had some hesitation. But the opportunity to be seen by a top neurologist - for FREE - swayed me. Before I describe the PPMI appointment with my new neurologist, Dr. Richard, from the University of Rochester, I need to backtrack to the opening evaluation.
How many times has this happened to you? The car is making a strange sound. It goes on for about a week so you make an appointment with the repair shop. You finally bring it in to be seen and.... nothing, the car runs and sounds fine. No strange noises. Well, that's what happened to me during my initial visit to my new neurologist. Frustrating!
It's been a couple months waiting for this appointment. Nothing new on the symptom front, little of this one day, little of that the next. Basic symptom roulette. We went through the normal battery of tests. Touch my finger, open and close your hand as quick as you can, tap your heel, all the basics. It's not that I want to have a neurological problem but when you're seeing a specialist you would kind of like them to at least see some symptoms that you've been seeing. I had little to no tremor and no rigidity. She did see some slowness my left hand so at least there was that. I have no idea why my symptoms abandoned me that day, but I still wanted to ask the question, do you think I have Parkinson's? She beat me to it and said if it's Parkinson's it VERY early. Hmm, Mr. overly observant strikes again. The DaTscan would hopefully answer a lot and was scheduled along with my first study visit.
I've always liked physical and mental tests. No, not the kind of tests you got in 10th-grade geometry. I like the ones that measured a particular skill or attribute like eyesight or memory. So this trial was right in my wheelhouse. I arrived on study day to be disappointed that I would have to wait another month for the DaTscan with the radioactive injection. There was a problem acquiring the juice they inject that lights up parts of your brain. Sorry, didn't mean to get all technical on you there, but, once again, more delays.
The study went on, though, and started with the fluids: blood, urine and, of course, spinal. I was nervous but as it turns out for nothing. They numb up your lower back then insert a small needle and basically tap you like a keg. I actually told the Doctor I had no idea when she started and when she stopped. I'm sure a lot was her technique, but it was a big relief. The rest of the testing was fun, well... kind of. It started with lots of questions to answer and to self-rate my levels. Sleeping, tremors, walking, getting dressed, turning in bed and about 30 more. Your basic, as it turns out, Parkinson's measurement scale (MDS-UPDRS) to determine the severity of your symptoms. Here is a link to the actual questions.
Then the memory tests started. I was asked to remember five words then repeat back as many as I could remember: face, velvet, church, daisy, red. Now quickly, because you're on a timer, name everything you can think of that starts with the letter F. Now name as many fruits as you can think of in 60 seconds. On this one, I wasted the bulk of my time trying to decide if a tomato was a fruit or a vegetable. There was also a cognitive test for executive function. The nurse would say a sequence of letters and numbers and you have to repeat them back rearranging letters in alphabetical order then numbers lowest to highest. For example, they say 4F2W and I would have to repeat back FW24. They keep adding numbers and letters until you get it wrong a couple times in a row. Have someone ask you this one out loud: 8AF3J71G. Go ahead, I'll wait.... My stupid competitiveness would always make me try and beat my previous score. These tests were supposed to be fun, not stressful! You are almost done with all the tests and you think "that wasn't so bad," and then they ask one final question. Now I'll ask you the same one, without peeking up above, repeat back to me the five words I asked you about at the beginning of the test. At that point, I remember staring out and thinking "What five words? Oh, uhh velvet, something, something...." There also were some other tests for sleepiness and depression/anxiety mixed in, but the one I found most odd was a picture of a lion, a camel, and a rhinoceros. I was asked to identify them. I did, then told them, "if I ever come here and cannot identify them, for God's sake, DON'T LET ME DRIVE HOME!" The neuro came in to do some quick physical tests to rate my levels and then you were done. If they could have done the scan it would have been about a 7 hour day, without it the testing takes 3-4 hours. All in all, it was actually pretty fun, and well worth the time. If you're interested in all the tests they perform or are just a geek like me then look here.
Next up: The DaTscan or how to get arrested at the dump
PPMI - Parkinson's Progression Markers Initiative -(link attached) You should look into doing this - even if you're reading this and don't have Parkinson's - they need you.
So as you probably figured out, I decided to join the trial. If you read my previous posts (you did, right?) you know I had some hesitation. But the opportunity to be seen by a top neurologist - for FREE - swayed me. Before I describe the PPMI appointment with my new neurologist, Dr. Richard, from the University of Rochester, I need to backtrack to the opening evaluation.
How many times has this happened to you? The car is making a strange sound. It goes on for about a week so you make an appointment with the repair shop. You finally bring it in to be seen and.... nothing, the car runs and sounds fine. No strange noises. Well, that's what happened to me during my initial visit to my new neurologist. Frustrating!
It's been a couple months waiting for this appointment. Nothing new on the symptom front, little of this one day, little of that the next. Basic symptom roulette. We went through the normal battery of tests. Touch my finger, open and close your hand as quick as you can, tap your heel, all the basics. It's not that I want to have a neurological problem but when you're seeing a specialist you would kind of like them to at least see some symptoms that you've been seeing. I had little to no tremor and no rigidity. She did see some slowness my left hand so at least there was that. I have no idea why my symptoms abandoned me that day, but I still wanted to ask the question, do you think I have Parkinson's? She beat me to it and said if it's Parkinson's it VERY early. Hmm, Mr. overly observant strikes again. The DaTscan would hopefully answer a lot and was scheduled along with my first study visit.
I've always liked physical and mental tests. No, not the kind of tests you got in 10th-grade geometry. I like the ones that measured a particular skill or attribute like eyesight or memory. So this trial was right in my wheelhouse. I arrived on study day to be disappointed that I would have to wait another month for the DaTscan with the radioactive injection. There was a problem acquiring the juice they inject that lights up parts of your brain. Sorry, didn't mean to get all technical on you there, but, once again, more delays.
The study went on, though, and started with the fluids: blood, urine and, of course, spinal. I was nervous but as it turns out for nothing. They numb up your lower back then insert a small needle and basically tap you like a keg. I actually told the Doctor I had no idea when she started and when she stopped. I'm sure a lot was her technique, but it was a big relief. The rest of the testing was fun, well... kind of. It started with lots of questions to answer and to self-rate my levels. Sleeping, tremors, walking, getting dressed, turning in bed and about 30 more. Your basic, as it turns out, Parkinson's measurement scale (MDS-UPDRS) to determine the severity of your symptoms. Here is a link to the actual questions.
Then the memory tests started. I was asked to remember five words then repeat back as many as I could remember: face, velvet, church, daisy, red. Now quickly, because you're on a timer, name everything you can think of that starts with the letter F. Now name as many fruits as you can think of in 60 seconds. On this one, I wasted the bulk of my time trying to decide if a tomato was a fruit or a vegetable. There was also a cognitive test for executive function. The nurse would say a sequence of letters and numbers and you have to repeat them back rearranging letters in alphabetical order then numbers lowest to highest. For example, they say 4F2W and I would have to repeat back FW24. They keep adding numbers and letters until you get it wrong a couple times in a row. Have someone ask you this one out loud: 8AF3J71G. Go ahead, I'll wait.... My stupid competitiveness would always make me try and beat my previous score. These tests were supposed to be fun, not stressful! You are almost done with all the tests and you think "that wasn't so bad," and then they ask one final question. Now I'll ask you the same one, without peeking up above, repeat back to me the five words I asked you about at the beginning of the test. At that point, I remember staring out and thinking "What five words? Oh, uhh velvet, something, something...." There also were some other tests for sleepiness and depression/anxiety mixed in, but the one I found most odd was a picture of a lion, a camel, and a rhinoceros. I was asked to identify them. I did, then told them, "if I ever come here and cannot identify them, for God's sake, DON'T LET ME DRIVE HOME!" The neuro came in to do some quick physical tests to rate my levels and then you were done. If they could have done the scan it would have been about a 7 hour day, without it the testing takes 3-4 hours. All in all, it was actually pretty fun, and well worth the time. If you're interested in all the tests they perform or are just a geek like me then look here.
Next up: The DaTscan or how to get arrested at the dump
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