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).

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!