Tuesday, August 23, 2016
Monday, August 22, 2016
Introduction to Me and my Blog
My name is Craig Haas. This is my first blog. I am starting it to share my personal story about my Parkinson's Disease diagnosis. My blog will not be solely about my Parkinson's Disease. I will also be telling other stories and sharing my thoughts on other issues. This one will be primarily about Parkinson's but also a good introduction to me.
I was diagnosed with Parkinson's on October 19th, 2015. Since then my life has changed very much for the better, although I think the story should start much sooner.
I grew up in a small town in Southern Minnesota. Upon graduation from high school, I did what everyone does, I left for college. There just isn't much opportunity in small rural towns. This upbringing also instilled in me a love of music, nature, science fiction, baseball, and my faith in Jesus. The majority of people who get Parkinson's are predominantly from rural areas. My maternal grandmother also passed away from Progressive SupraNuclear Palsy, a condition very closely related to Parkinson's. Genetic causes of parkinson's are being researched.
I went to South Dakota State University from the fall of 1989 to May of 1994. I had a lot of fun and did well academically. I was involved in FarmHouse Fraternity. The winter of 1992 my fraternity brothers went snow tubing on a hill near my hometown. I ended up colliding head to head with another person on the hill and sustained a concussion. Head Injuries are another risk factor for Parkinson's.
I graduated with a degree in Civil Engineering in May of 1994. I moved to Sioux Falls, SD to work at Egger Steel Company. With a lot more time on my hands, I started working out that summer, mostly biking. When I graduated I had a pretty good beer belly. I had worked hard to earn that, but was anxious to get rid of it. As it grew colder that fall, I joined Woodlake Athletic Club and started doing aerobics. They had some great starter classes that got me into it and gradually I worked my way into the tougher classes. In addition I started eating healthier and went from 185-190 pounds down to 150 pounds. I had a resting heart rate in the 40s, and maintained reasonable blood pressure and cholesterol levels. Genetics handicapped me and prevented me from getting the numbers in a truly healthy range, but they weren't bad. Heart health was my focus as my Dad went through his first open Heart Surgery the day before his 50th birthday during this time.
My career was off to a good start, but I felt the urge to continue my education. So in September of 1996, I moved to Minneapolis to work at LeJeune Steel company and pursue my Masters in Civil Engineering at the University of Minnesota. I also Joined Lifetime Fitness and continued working out. I maintained my slender shape and was addicted to working out. I did a lot of kickboxing, step aerobics, and High/Lo Cardio classes. I also put on at least 100 miles a week on my GT mountain bike. Living in Eagan, MN gives you access to Lebanon Hills and Murphy Hanrehan Parks. During this time I could dunk a basketball, I am only 5'-8" tall. I was in good cardiovascular shape, although I did not do a lot of strength training. My only vice was maybe drinking a little too much Foster's Lager (see photo).
In 1999 I met my beautiful wife Amy. We were set up through mutual friends from Sioux Falls. We got married in September 2001, living in my townhome in Eden Prairie, MN. We ended up moving to a larger home soon after and starting a family. Courtney arrived in 2004. Evelyn followed in 2007. They are incredible blessings and having children is a life changing experience. I want to be around and active for many more years to experience life with them and hopefully grandchildren someday.
I was 33 in Feb. 2004 when our first child Courtney was born. During this time was when the Parkinson's symptoms started kicking in, although I did not realize it at the time. The energy and vigor that I had in my 20s was gone. I don't have exact statistics, but guess I went from 150 lbs to about 185-190 lbs. I had slowed down. Working out was no longer enjoyable. My doctor appointments often went like this.....
Doctor - "Craig, you need to lose weight."
Me - "Ya, no kidding."
Doctor - "You need to exercise, and watch what you eat."
Me - "If you want me to work out, you have to figure out what is wrong with me."
Doctor - "What do you mean?"
Me - "My muscles don't work any more. It hurts when I work out. It's like they are stiff, or rigid or something.
Doctor - "Hmm, lets check a few things."
Then they would take blood, check for arthritis, MS, ALS, whatever else they thought. Then we would get the results.
Doctor - "Craig, there is nothing that I can find that is causing this. Try simple activities, walking, etc, but you need to lose weight."
Me - I'll try doc, but when I used to work out, I would feel loose and energized. Even when I worked out too intensely and was tired, I could still tell that it was doing me good. Now, it doesn't matter what I do. Even too many brisk walks make me ache all over. And if I push it, I end up getting sick, usually bronchitis, or pneumonia."
Doctor - "You are not 25 anymore. You may need to push through some pain to get back in shape"
The doctors were always concerned most about heart issues because of family history of early heart disease. The muscle soreness and rigidity I now know to be caused by Parkinson's. The best way to describe it is that your muscles are bike chains instead of muscles, and they don't quite match up with the sprocket at the end. I still have some of this in my left hand/wrist as I am trying to type this. The fatigue is probably the most insidious symptom of this horrible disease. To be constantly tired and worn out after doing pretty much nothing sucks. To get to the point where you are so fatigued that you get ill is diabolical. I have never been one to sit still for very long, but this symptom turned me into a sloth, for years, at a time when I should have been enjoying my young family. Anyone with young kids knows how difficult it can be to keep up with them. Undiagnosed Parkinson's made it even tougher.
Fast forward to my early 40s. I was still in the same boat with muscle rigidity and fatigue. I managed to do some aerobics at Lifetime Fitness Clubs in Minneapolis St. Paul area. Then in early January 2011 at the age of 40, I tore my left calf muscle. I was still heeding the doctor's advice trying to get back in shape. By this time I weighed probably closer to 200 pounds. I tore the calf in a group fitness class at Lifetime Fitness in Savage, MN. Although this is a common injury among middle aged weekend warriors, mine happened 45 minutes into the class. I was well warmed up, it is not as common to tear a warm muscle. It happened pushing off my left foot into a sprint. The next day it was black, blue, purple, and green and hurt like hell. It was also stiff and my entire ankle joint filled with blood. I walked funny for 3 months and it took me 6 months in order to get back to normal. I had a good deal of Physical therapy in order to get back to normal. I reinjured it a couple more times over the next couple of years. Each time my physical therapy exercises would bring it back to normal.
My family ended up moving from Burnsville, MN to Des Moines, IA in August 2011. I moved for a career opportunity. It has turned out to be a good move for us. But during this time, symptoms continued to progress. My wife during this time thought that I was getting depressed. I didn't feel depressed, but I felt emotionally blah. Food did not taste good, music did not move me like it normally would, and I felt disconnected from those around me. I took my wife to one of my doctor appointments. I told him about the new issues. Once again the doctors focused on heart issues. They checked for diabetes, looked again at cholesterol levels, and blood pressure. Eventually I was put on a blood pressure medication and a statin lowering medication. It helped my cholesterol and blood pressure numbers, but it did not change my mood, my energy, or my muscle rigidity. Depression, lack of taste, and emotional disconnect from loved ones are all symptoms of Parkinson's disease.
By early 2015, I was out of shape and weighed around 200 pounds. I had no energy. Then the summer of 2015 came along. I started having a consistent issue with limping. This time it was different. My physical therapy exercises and stretches did not help it. In addition, my left side felt uncoordinated, both my arm and my leg. A couple other odd symptoms appeared too. When I yawned, my left side would shudder. When I washed my hair in the morning, my right hand subconsciously did all the work. And when I took one of my painful walks, my left arm would not swing, unless I forced it to. Back to the doctor for a normally scheduled physical. This time, they checked for arthritis (again), did an MRI on my brain to check for cancer, and checked for MS and ALS (I think). When all those came back negative (thank God), I was sent to a neurologist. My family doctor indicated that a neurologist would be best to rule out any neurological issues. I was sure I was having side affects from my blood pressure and statin lowering meds, and would get the same story about working out to lose weight and watch what I eat.
October 19th, 2015 came and my neurologist spent quite a bit of time with me, looking at my file and asking questions. He had a very confident and compassionate tone when he told me that I had Parkinson's Disease. He was also very confident when he told me that "We have a lot of treatments available and that this should be nothing more than a minor inconvenience for the next 15 to 20 years." So far, I have no reason to doubt him. He put me on a relatively low dose of ropinirole. I am not completely sure how this works, it is an dopamine agonist which makes the dopamine that I do produce work better. I know that it is nothing short of a miracle. Within a week, I felt like a completely different person, and I wasn't even up to the full dose yet. My muscle rigidity - gone. Fatigue - gone, I actually had energy. Connection with others - I actually again had a desire to spend time with people. My blah feelings - gone. Music - all of a sudden needed to be turned up and enjoyed. Food - it actually had taste again. The oddest thing was the affect on my calf muscle. The pain disappeared overnight, although my limp persisted. My neurologist also sent me to physical therapy.
I reported to Mercy Riverside Rehab for Physical Therapy shortly after my neurology appointment. Right as the medication was starting to take affect, my therapist started to get me stretched out, strengthened, and developed my understanding of the challenges that I had before me. I also sat down with my therapist and my Lifetime Fitness Class Schedule. She circled classes that would be good for me and pointed out a number of online references to read about symptoms and how exercising would help. There were a lot of differing opinions. Some sights indicated that yoga was best, others suggested lifting weights, some sights liked boxing, some indicated just plain old walking was best, still others indicated rhythmic dancing like Zumba. Not being entirely sure what to believe I said, "I am just going to do it all!!!"
Thus started my path back to a healthier more active life. I worked up a schedule with weights M/W/F morning, Yoga T/Th morning, kickboxing Monday nights, Dance Jam on Wed. nights and Saturday mornings. And I usually walk 3+ miles on T/Th nights when my daughter is at Karate. I showed this to my therapist, she said go for it, but listen to your body, and life has a tendency to get in the way. She is right. There are not many weeks that I do all of the workouts. But, there are also not many weeks that I don't make most of it. I have went from around 200 lbs down to 165 lbs and have toned up my body. Doing active things with my family is enjoyable again. (see photo)
I also have to take a little time to say how much I appreciate the efforts of my entire medical team in the Mercy Medical system. My family practice Dr. and my Neurologist both do an excellent job of not only diagnosing and treating me, they have a caring attitude that makes the situation less stressful, and a healing experience. As for the Physical and Occupational Therapists at Mercy Riverside, they claim to be locals, living in Des Moines or the surrounding area. I know better, and am sure that at the end of the day, their wings unfurl and they fly back up to Heaven. Their competence and compassion is unmatched by any other medical professionals with which I have had the pleasure to work. I believe this strongly enough to have sought out the Chief Physician for the Mercy Medical System and told him personally over breakfast. It did not take long to realize that the competence and compasssion are also present in the top doctor. Interest in me and the affect Parkinson's has had on me were his top concern. I have not named any of the medical professionals, but will share this blog with them and add their names if they so desire.
I can also say that I am fortunate to live close to a Lifetime Fitness. Their claim to be "The Healthy way of Life Company" is right on. The variety of fitness tools at your disposal as a member is significant. They also maintain a very clean, pleasant club. Since exercise is the only proven way to slow the progression of Parkinson's, they are going to be a vital partner in my fight to remain active for years to come. The yoga and group fitness instructors are top notch. I let most of them know that I have Parkinson's and am using their class as therapy. I want them to know I may make adjustments but that they need to do nothing to accommodate me. I want them to push me as hard or harder than anyone else in the room. I will be sharing this blog with them as well and will be adding their names if they desire the recognition that they deserve.
6 months into my fight, I am doing well. I remain on a low dose of ropinirole. I have not been able to completely get rid of my limp, and my left arm swing is still an issue. But they are minor enough that it is still in the "minor inconvenience" stage. My neurologist recently added Azilect to help with these two issues. It helped a little, but made me quite drowsy, so I opted to just stay on the ropinirole. The only side affect of the ropinirole so far is drowsiness, about 45 minutes to 1-1/2 hours after I take it. With my better health, I have just reduced my blood pressure medication. This seams to be helping the drowsiness issue quite a bit. It may sound odd, but I do not want to completely get rid of my symptoms unless a cure is found. I do not want to get complacent and let my guard down for even a second. I need to continue the fight. My hope is to get off all other meds so I am dealing only with Parkinson's meds, until it is cured and I no longer need them.
Michael J. Fox's Foundation has completely changed the pace of the fight. If this blog makes it to him, I would love to meet him to say thank you. When this disease is cured in my lifetime, it will be in no small part because of his efforts. Parkinson's has been viewed as that old person's disease and has been underfunded because of that. The attention that Michael has brought and his drive have taken the number of treatment options from a few to 40+. The toughest thing about the research has been that there is no test to determine that you have Parkinson's, other than the observation of symptoms. Parkinson's is caused by the brain not producing enough dopamine. This hinders the ability of neurons to send signals in the brain. Ironically, the brain functions fine all the way down to 20% of normal dopamine production. So, by the time you find out you have Parkinson's, you are already at 20% of normal dopamine production. The only way to test the dopamine level is an autopsy, since removing your brain tends to be rather fatal.
There are some interesting areas of research currently underway. Misfolded proteins called Alpha-Synulceins are being investigated as not only a marker, but a possible cause of the disease. If this turns out to be correct and leads to a cure, not only will Parkinson's be cured, but also Alzheimers and other related diseases. I try to remain positive without getting unrealistically optimistic. A cure is likely years away. Until then I am going to work with my neurologist and medical team to control my symptoms. I will also fight this horrible disease with everything that I have in me!
I was diagnosed with Parkinson's on October 19th, 2015. Since then my life has changed very much for the better, although I think the story should start much sooner.
I grew up in a small town in Southern Minnesota. Upon graduation from high school, I did what everyone does, I left for college. There just isn't much opportunity in small rural towns. This upbringing also instilled in me a love of music, nature, science fiction, baseball, and my faith in Jesus. The majority of people who get Parkinson's are predominantly from rural areas. My maternal grandmother also passed away from Progressive SupraNuclear Palsy, a condition very closely related to Parkinson's. Genetic causes of parkinson's are being researched.
I went to South Dakota State University from the fall of 1989 to May of 1994. I had a lot of fun and did well academically. I was involved in FarmHouse Fraternity. The winter of 1992 my fraternity brothers went snow tubing on a hill near my hometown. I ended up colliding head to head with another person on the hill and sustained a concussion. Head Injuries are another risk factor for Parkinson's.
I graduated with a degree in Civil Engineering in May of 1994. I moved to Sioux Falls, SD to work at Egger Steel Company. With a lot more time on my hands, I started working out that summer, mostly biking. When I graduated I had a pretty good beer belly. I had worked hard to earn that, but was anxious to get rid of it. As it grew colder that fall, I joined Woodlake Athletic Club and started doing aerobics. They had some great starter classes that got me into it and gradually I worked my way into the tougher classes. In addition I started eating healthier and went from 185-190 pounds down to 150 pounds. I had a resting heart rate in the 40s, and maintained reasonable blood pressure and cholesterol levels. Genetics handicapped me and prevented me from getting the numbers in a truly healthy range, but they weren't bad. Heart health was my focus as my Dad went through his first open Heart Surgery the day before his 50th birthday during this time.
My career was off to a good start, but I felt the urge to continue my education. So in September of 1996, I moved to Minneapolis to work at LeJeune Steel company and pursue my Masters in Civil Engineering at the University of Minnesota. I also Joined Lifetime Fitness and continued working out. I maintained my slender shape and was addicted to working out. I did a lot of kickboxing, step aerobics, and High/Lo Cardio classes. I also put on at least 100 miles a week on my GT mountain bike. Living in Eagan, MN gives you access to Lebanon Hills and Murphy Hanrehan Parks. During this time I could dunk a basketball, I am only 5'-8" tall. I was in good cardiovascular shape, although I did not do a lot of strength training. My only vice was maybe drinking a little too much Foster's Lager (see photo).
 |
| Summer of 1998 when I was 27 |
In 1999 I met my beautiful wife Amy. We were set up through mutual friends from Sioux Falls. We got married in September 2001, living in my townhome in Eden Prairie, MN. We ended up moving to a larger home soon after and starting a family. Courtney arrived in 2004. Evelyn followed in 2007. They are incredible blessings and having children is a life changing experience. I want to be around and active for many more years to experience life with them and hopefully grandchildren someday.
I was 33 in Feb. 2004 when our first child Courtney was born. During this time was when the Parkinson's symptoms started kicking in, although I did not realize it at the time. The energy and vigor that I had in my 20s was gone. I don't have exact statistics, but guess I went from 150 lbs to about 185-190 lbs. I had slowed down. Working out was no longer enjoyable. My doctor appointments often went like this.....
Doctor - "Craig, you need to lose weight."
Me - "Ya, no kidding."
Doctor - "You need to exercise, and watch what you eat."
Me - "If you want me to work out, you have to figure out what is wrong with me."
Doctor - "What do you mean?"
Me - "My muscles don't work any more. It hurts when I work out. It's like they are stiff, or rigid or something.
Doctor - "Hmm, lets check a few things."
Then they would take blood, check for arthritis, MS, ALS, whatever else they thought. Then we would get the results.
Doctor - "Craig, there is nothing that I can find that is causing this. Try simple activities, walking, etc, but you need to lose weight."
Me - I'll try doc, but when I used to work out, I would feel loose and energized. Even when I worked out too intensely and was tired, I could still tell that it was doing me good. Now, it doesn't matter what I do. Even too many brisk walks make me ache all over. And if I push it, I end up getting sick, usually bronchitis, or pneumonia."
Doctor - "You are not 25 anymore. You may need to push through some pain to get back in shape"
The doctors were always concerned most about heart issues because of family history of early heart disease. The muscle soreness and rigidity I now know to be caused by Parkinson's. The best way to describe it is that your muscles are bike chains instead of muscles, and they don't quite match up with the sprocket at the end. I still have some of this in my left hand/wrist as I am trying to type this. The fatigue is probably the most insidious symptom of this horrible disease. To be constantly tired and worn out after doing pretty much nothing sucks. To get to the point where you are so fatigued that you get ill is diabolical. I have never been one to sit still for very long, but this symptom turned me into a sloth, for years, at a time when I should have been enjoying my young family. Anyone with young kids knows how difficult it can be to keep up with them. Undiagnosed Parkinson's made it even tougher.
Fast forward to my early 40s. I was still in the same boat with muscle rigidity and fatigue. I managed to do some aerobics at Lifetime Fitness Clubs in Minneapolis St. Paul area. Then in early January 2011 at the age of 40, I tore my left calf muscle. I was still heeding the doctor's advice trying to get back in shape. By this time I weighed probably closer to 200 pounds. I tore the calf in a group fitness class at Lifetime Fitness in Savage, MN. Although this is a common injury among middle aged weekend warriors, mine happened 45 minutes into the class. I was well warmed up, it is not as common to tear a warm muscle. It happened pushing off my left foot into a sprint. The next day it was black, blue, purple, and green and hurt like hell. It was also stiff and my entire ankle joint filled with blood. I walked funny for 3 months and it took me 6 months in order to get back to normal. I had a good deal of Physical therapy in order to get back to normal. I reinjured it a couple more times over the next couple of years. Each time my physical therapy exercises would bring it back to normal.
My family ended up moving from Burnsville, MN to Des Moines, IA in August 2011. I moved for a career opportunity. It has turned out to be a good move for us. But during this time, symptoms continued to progress. My wife during this time thought that I was getting depressed. I didn't feel depressed, but I felt emotionally blah. Food did not taste good, music did not move me like it normally would, and I felt disconnected from those around me. I took my wife to one of my doctor appointments. I told him about the new issues. Once again the doctors focused on heart issues. They checked for diabetes, looked again at cholesterol levels, and blood pressure. Eventually I was put on a blood pressure medication and a statin lowering medication. It helped my cholesterol and blood pressure numbers, but it did not change my mood, my energy, or my muscle rigidity. Depression, lack of taste, and emotional disconnect from loved ones are all symptoms of Parkinson's disease.
 |
| Early 2015 with me and my daughters |
By early 2015, I was out of shape and weighed around 200 pounds. I had no energy. Then the summer of 2015 came along. I started having a consistent issue with limping. This time it was different. My physical therapy exercises and stretches did not help it. In addition, my left side felt uncoordinated, both my arm and my leg. A couple other odd symptoms appeared too. When I yawned, my left side would shudder. When I washed my hair in the morning, my right hand subconsciously did all the work. And when I took one of my painful walks, my left arm would not swing, unless I forced it to. Back to the doctor for a normally scheduled physical. This time, they checked for arthritis (again), did an MRI on my brain to check for cancer, and checked for MS and ALS (I think). When all those came back negative (thank God), I was sent to a neurologist. My family doctor indicated that a neurologist would be best to rule out any neurological issues. I was sure I was having side affects from my blood pressure and statin lowering meds, and would get the same story about working out to lose weight and watch what I eat.
October 19th, 2015 came and my neurologist spent quite a bit of time with me, looking at my file and asking questions. He had a very confident and compassionate tone when he told me that I had Parkinson's Disease. He was also very confident when he told me that "We have a lot of treatments available and that this should be nothing more than a minor inconvenience for the next 15 to 20 years." So far, I have no reason to doubt him. He put me on a relatively low dose of ropinirole. I am not completely sure how this works, it is an dopamine agonist which makes the dopamine that I do produce work better. I know that it is nothing short of a miracle. Within a week, I felt like a completely different person, and I wasn't even up to the full dose yet. My muscle rigidity - gone. Fatigue - gone, I actually had energy. Connection with others - I actually again had a desire to spend time with people. My blah feelings - gone. Music - all of a sudden needed to be turned up and enjoyed. Food - it actually had taste again. The oddest thing was the affect on my calf muscle. The pain disappeared overnight, although my limp persisted. My neurologist also sent me to physical therapy.
I reported to Mercy Riverside Rehab for Physical Therapy shortly after my neurology appointment. Right as the medication was starting to take affect, my therapist started to get me stretched out, strengthened, and developed my understanding of the challenges that I had before me. I also sat down with my therapist and my Lifetime Fitness Class Schedule. She circled classes that would be good for me and pointed out a number of online references to read about symptoms and how exercising would help. There were a lot of differing opinions. Some sights indicated that yoga was best, others suggested lifting weights, some sights liked boxing, some indicated just plain old walking was best, still others indicated rhythmic dancing like Zumba. Not being entirely sure what to believe I said, "I am just going to do it all!!!"
Thus started my path back to a healthier more active life. I worked up a schedule with weights M/W/F morning, Yoga T/Th morning, kickboxing Monday nights, Dance Jam on Wed. nights and Saturday mornings. And I usually walk 3+ miles on T/Th nights when my daughter is at Karate. I showed this to my therapist, she said go for it, but listen to your body, and life has a tendency to get in the way. She is right. There are not many weeks that I do all of the workouts. But, there are also not many weeks that I don't make most of it. I have went from around 200 lbs down to 165 lbs and have toned up my body. Doing active things with my family is enjoyable again. (see photo)
I also have to take a little time to say how much I appreciate the efforts of my entire medical team in the Mercy Medical system. My family practice Dr. and my Neurologist both do an excellent job of not only diagnosing and treating me, they have a caring attitude that makes the situation less stressful, and a healing experience. As for the Physical and Occupational Therapists at Mercy Riverside, they claim to be locals, living in Des Moines or the surrounding area. I know better, and am sure that at the end of the day, their wings unfurl and they fly back up to Heaven. Their competence and compassion is unmatched by any other medical professionals with which I have had the pleasure to work. I believe this strongly enough to have sought out the Chief Physician for the Mercy Medical System and told him personally over breakfast. It did not take long to realize that the competence and compasssion are also present in the top doctor. Interest in me and the affect Parkinson's has had on me were his top concern. I have not named any of the medical professionals, but will share this blog with them and add their names if they so desire.
I can also say that I am fortunate to live close to a Lifetime Fitness. Their claim to be "The Healthy way of Life Company" is right on. The variety of fitness tools at your disposal as a member is significant. They also maintain a very clean, pleasant club. Since exercise is the only proven way to slow the progression of Parkinson's, they are going to be a vital partner in my fight to remain active for years to come. The yoga and group fitness instructors are top notch. I let most of them know that I have Parkinson's and am using their class as therapy. I want them to know I may make adjustments but that they need to do nothing to accommodate me. I want them to push me as hard or harder than anyone else in the room. I will be sharing this blog with them as well and will be adding their names if they desire the recognition that they deserve.
6 months into my fight, I am doing well. I remain on a low dose of ropinirole. I have not been able to completely get rid of my limp, and my left arm swing is still an issue. But they are minor enough that it is still in the "minor inconvenience" stage. My neurologist recently added Azilect to help with these two issues. It helped a little, but made me quite drowsy, so I opted to just stay on the ropinirole. The only side affect of the ropinirole so far is drowsiness, about 45 minutes to 1-1/2 hours after I take it. With my better health, I have just reduced my blood pressure medication. This seams to be helping the drowsiness issue quite a bit. It may sound odd, but I do not want to completely get rid of my symptoms unless a cure is found. I do not want to get complacent and let my guard down for even a second. I need to continue the fight. My hope is to get off all other meds so I am dealing only with Parkinson's meds, until it is cured and I no longer need them.
Michael J. Fox's Foundation has completely changed the pace of the fight. If this blog makes it to him, I would love to meet him to say thank you. When this disease is cured in my lifetime, it will be in no small part because of his efforts. Parkinson's has been viewed as that old person's disease and has been underfunded because of that. The attention that Michael has brought and his drive have taken the number of treatment options from a few to 40+. The toughest thing about the research has been that there is no test to determine that you have Parkinson's, other than the observation of symptoms. Parkinson's is caused by the brain not producing enough dopamine. This hinders the ability of neurons to send signals in the brain. Ironically, the brain functions fine all the way down to 20% of normal dopamine production. So, by the time you find out you have Parkinson's, you are already at 20% of normal dopamine production. The only way to test the dopamine level is an autopsy, since removing your brain tends to be rather fatal.
There are some interesting areas of research currently underway. Misfolded proteins called Alpha-Synulceins are being investigated as not only a marker, but a possible cause of the disease. If this turns out to be correct and leads to a cure, not only will Parkinson's be cured, but also Alzheimers and other related diseases. I try to remain positive without getting unrealistically optimistic. A cure is likely years away. Until then I am going to work with my neurologist and medical team to control my symptoms. I will also fight this horrible disease with everything that I have in me!
Wednesday, June 15, 2016
Music and my Parkinson's Journey
One of the most difficult things to learn when I was diagnosed with Parkinson's was the non-motor symptoms that it can cause, and was causing. One of these is depression. Although I was checked for depression and did not meet the medical criteria based on a list of questions from my doctor, Parkinson's greatly affected my mood. It caused a blah gray mood that affected my ability to enjoy music. For me, this was a horrible realization since I love music and it has always been part of my life and identity. Thank goodness that my medication has improved this situation.
About a week after being diagnosed and starting meds, I noticed things starting to change. The most difficult to understand was how music sounded. The blah sound that I was used to hearing started melting away, being replaced by the beautiful music that I remembered from my younger days. I listened to Haydn's string quartet in G major OPUS #76. All the way through. The second movement moved me to tears. This is still one of my favorite pieces of music. I had not truly enjoyed listening to it in years. It was like a long lost friend returning after years of being away, having left abruptly with no explanation.
About a week after being diagnosed and starting meds, I noticed things starting to change. The most difficult to understand was how music sounded. The blah sound that I was used to hearing started melting away, being replaced by the beautiful music that I remembered from my younger days. I listened to Haydn's string quartet in G major OPUS #76. All the way through. The second movement moved me to tears. This is still one of my favorite pieces of music. I had not truly enjoyed listening to it in years. It was like a long lost friend returning after years of being away, having left abruptly with no explanation.
I had known that music had sounded blah to me for quite a while and I had been searching for a solution. I had been challenging younger people to find out what they were listening to. I was disappointed that I could not find something new and fresh to reinvigorate my love of music. My re found ability to enjoy music now that my PD is being treated has put the desire back in me to find new music. So, most of the rest of this blog was written about 6 years ago to some younger coworkers after a lunchroom discussion. I have updated it a bit. Please Millenials, do not take offense. Consider this a sincere plea from a man who loves music.........
“The current young generation will be
the first in 150 years of United States History to not contribute a new musical
genre to the popular culture landscape of America.”
Let’s define
the current young generation versus “my generation”. My generation - Generation X - is typically
defined as people born in the 1960s and 1970s, sometimes being defined to end
in the early 1980s, (Wikipedia). I was
born in 1970 – right in the heart of generation X. If you are currently mid 30s or under you
are part of the “young generation”, “generation Y”, “millennials”, etc..
My music
background – I played trumpet through high school and my freshman year of
college. I have played it on and off
since. I sang one year in high school
pop choir and have sang bass in my church choirs since 1998. I have a pretty good ear for music. I know what a key signature is and understand
the basics of rhythm. I do not claim to
be an expert on music composition; I have never played piano or guitar. Although I learned chords years ago when
first picking up the trumpet, I have long since forgotten them other than the most commonly used ones. I would classify me as a bit better than
average on music knowledge and music experience. I also have a wide range of musical
taste. I listen most often to Jazz and
Classical, although I have pop, rock, country, dance, electonica, religious and
almost everything in between on my cloud account, about 600 CDs (yes actually purchased and burned CDs) worth – 40 gigs or so. In short, I love music.
Next let’s
discuss what a genre is. A genre is
defined by Merriam Webster as “a category of artistic, musical or literary
composition characterized by a particular style, form or content.” By Genre I am talking broadly – not sub genres
or progression within a genre. I am
talking about a standalone new group of music that defines itself as a new
category. Taking a genre in a different
direction with new chord progressions, although admirable artistically and
musically, does not meet my classification as creating a new genre.
Next, we need
to look at history. Americans started
making uniquely American music in the middle of the 1800s. The first settlers held onto their European
roots and listened to the romantic genres popular in Europe as they were
leaving and settling in the new world.
The first new uniquely American genres were early folk and ragtime. These have influenced the music that we
listen to today. Americans have
continued to progress by creating new genres that are influenced by previous
ones, but stand on their own as a new category.
This progression has come to a screeching halt with the current young
generation.
See this
Wikipedia diagram of Musical genres….
http://en.wikipedia.org/wiki/File:Genealogy_cuban_music.png
Although
this is intended to show Cuban music, it includes the United States and its
major genres. I selected it for its relative simplicity. Notice that there is
nothing beyond the 1990s. Admittedly it
is difficult to classify music. I am not
sure that Swing really is deserving of its own genre in the early 1990s. That was all the rage for a while, along with
the accompanying swing dancing. It was
incredibly short lived. I may also point
out that one of the popular groups during that time was the Brian Setzer
Orchestra. Brian was lead singer and
songwriter for the Stray Cats – a group that was popular in the early
1980’s. He was doing swing long before
it became popular in the early 1990s. I
am not sure that this is real relevant to the discussion though since the early
1990s are still within the generation X influence of music creation. Also absent, that I believe is more important
than swing during this period is the Grunge genre, although this is much more
of a sub genre of rock and roll, and a direct move away from the showy hair
metal of the late 1980s.
For the
purposes of this post, I am going to claim that the 1980s/1990s - generation
X - created 2 new genres, Rap/Hip Hop and Electronic music. The previous Wikipedia chart shows the rap / hip
hop genre created by my generation. I am
going to include those in one broad genre since they are so closely
related. The other electronic music
genre is not shown in the chart probably mainly because it has not influenced
Cuban Music, the purpose of the chart.
There are many other time lines and charts online, some much more
involved although all of them tend to show my main point. Everything the
current generation is listening to and experimenting with has its roots in the
1980s or earlier. Whether Alternative,
Punk, SKA, or whatever else you may call it, I will quote Billy Joel - “Hot funk,
cool punk, even if its old junk it’s still rock n roll to me.”
Now, let’s
discuss what this statement does not mean.
It in no way means that I believe the current young generation does not
have musical talent. There are talented
young musicians. I admit that my
ability and desire to follow music has waned incredibly in the last 12 years or
so, coinciding directly with the age of my oldest daughter. But turning on the
radio I can appreciate talented musicians when I hear them, and there are many. It also does not mean that there has not been
any progression within the rock and roll genre.
If I expanded the discussion to that, then I could also bring up many
other sub genres that were created by generation x.
When having
this discussion with a gen y’er a few years ago, he suggested that I listen to
radiohead’s King of limbs, and even shared the CD with me. The radiohead sound was quite impressive and
different. The difficulty of playing the
drums on the first track “Bloom” was evident – and definitely different. But, difficult and different does not support
an entirely new Genre. Also, my statement limits the new generation to the US – radiohead is an English group, and according to Wikipedia was formed in 1985.
Also its first album was released in
1992. Once again, starting right in the
heart of generation X’s influential time period. To claim them as a band of the young
generation would be like generation X claiming the Beatles. Also, the UK and the United states are
closely linked when it comes to their current popular music, so I will yield
and open up the discussion to the UK if you think that can support any
rebuttal.
Another point of my statement is that the new Genre has to influence the cultural landscape of The United States. Rap and Hip Hop have had a huge effect on the current culture. Electronica/Dance has also shown up in popular culture and had its affect. Time is running out for the millennial generation to come up with music that will influence popular culture. If they have created anything that constitutes a new Genre, it has to show up in popular culture. It has not.
Another point of my statement is that the new Genre has to influence the cultural landscape of The United States. Rap and Hip Hop have had a huge effect on the current culture. Electronica/Dance has also shown up in popular culture and had its affect. Time is running out for the millennial generation to come up with music that will influence popular culture. If they have created anything that constitutes a new Genre, it has to show up in popular culture. It has not.
Now, let’s
discuss the 1980’s. I did not intend to
argue that the 1980’s was without fault. This is also not a discussion about which
generation has produced more “good” music or has the most talented
musicians. Some of the groups that were
popular in the heart of the hair metal (sub genre of rock and roll) period had
far more hair spray than actual music talent.
You don’t need to search too long for a few that come to mind. The purpose of the original comment was to
place a distinction between the approach to “new music” creation in the 1980s
and the current young generation. The
current young generation is still playing around with genres created by
previous generations. They have not
created anything new that is a standalone new musical context. My grandfather’s generation created Big Band
and modern jazz. My father’s generation
created Rock and Roll. My generation
created Rap / Hip hop and electronica.
The current young generation – ?
Maybe you can fill in the blank.
Maybe you don’t care even if you can’t.
Maybe it does not bother you. Maybe
it should.
Now, I will
share possible explanations why I believe that the current generation may not
have created a new genre.
First, a lot
of new music is driven by new instruments being invented. There have not been many new instruments
invented recently that I am aware of. My father’s
generation was given the electric guitar.
My generation was given the electronic sounds to experiment with. Rap started with inner city youth having
access to nothing more than some old records and a turn table. Interesting that as you listen to records
repeatedly, the sound quality degrades.
The first portion of the sound to be lost is the lyrics and rhythm and
lead guitars. The last to be lost is the bass guitar and drums. This is due to the needle carving a deeper
groove in the record and wearing away the sound information on it. Take a bass guitar line with a drum beat,
start adding in the missing pieces by talking about the world around you and out comes a new genre that has had a profound influence on music. It is interesting to note that I think the
Rap genre has been embraced more by the young generation than by us older gen
Xers who invented it.
Second, I
think the entire society has become more connected electronically (social media, smart phones, etc...) and far less connected on a personal or emotional
level. I remember very clearly cruising
main street of my hometown after school in my friend’s minivan with several other
friends listening to Def Leppard’s Hysteria album – on cassette. People relating to each other through music
has to be part of the creative process.
This was the way we interacted, personally, face to face, no cell
phones, no texting, no facebook updates, just hanging out, oftentimes with
music. I don’t see this happening with
the younger generation.
Third and
lastly, the way music is distributed has changed drastically. The current generation does not need to wait
for what Epic or Atlantic decides to distribute on a CD or cassette. They can access music, licensed or unlicensed
from their favorite groups. This, I
believe may be having the greatest impact.
I actually think that there are far more new potential “genres” out
there that have not been realized because it is much more difficult for the
music industry to capture and distribute it, and much more difficult for the
average teen or twenty something (or me) to find it.
This is not necessarily a bad thing.
It may lend the young generation to far greater artistic flexibility and
inspiration than any previous generations.
Too bad that it hasn’t seemed to work that way.
First - Musical ignorance of the young generation - One thing that irritates me is young people saying things like “I hate that crappy 80s music, I listen to rap.” Or, hearing young people speak disparagingly about 80s music walking out of Abercrombie and Fitch, while a hip-hop cover version of a Madonna song blares in the background. Both of these cases I have witnessed firsthand, and show an incredible amount of musical ignorance. If I am able to correct a bit of this my time to write this will have been worth it.
Second - US prosperity - The United States has remained at the top of the list of world powers because of its economic prosperity and strength. Even throughout the decades when our schools suck, we still generally remain productive and strong. I believe this to be due to our ingenuity and ideas. I believe that our creativity is our strongest skill and greatest export. If we can't be creative in our music, a topic that is by its very nature a creative endeavor, we are doomed. As the Millenial generation ages and takes on a leadership role in society, if they are not creative and able to generate new ideas, I do not like our chances of maintaining our status as a world power. At that point we would need to fall back and rely on our good public school education system - God help us. Sorry - this portion was way too deep for a discussion about music.
Third - All this being said, my main motivation for this discussion is that I am getting tired of music. There are times when I spend ½ hour looking for internet radio stations with something different – to no avail. I think that there is a current void in music that needs to be filled. I am ready for something new. My generation has done their job, as have previous US generations for the last 150 years. SO, now my challenge to you Millenials is this…
GIVE ME SOMETHING NEW TO WHICH I CAN LISTEN!
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