You don't lose when you get knocked down.

 There is a saying in boxing that you don't lose when you get knocked down.  You lose when you don't get back up.  I find this saying to be very appropriate to describe my ongoing battle with Parkinson's disease.  Parkinson's is relentless.  It is going to keep on progressing and trying to knock me down.   When I was first diagnosed in October of 2015, it felt like a punch to the gut.  So I started a rigorous 2 hrs / day exercise regimen. I felt better than I had in years and made changes to my life so that I could continue to live it as fully as possible. I got back up after the gut punch.

I may have pushed it a little too hard, as I ended up with a herniated disc in my low back in 2018, and had surgery on it in January 2019.  I had to slow down while I recovered and got completely out of shape.  All the gains I made in the past couple of years had been lost.  Laying around and being inactive is the worst thing you can do when you have Parkinsons.  I not only got out of shape, my Parkinsons got worse.

During one of my scans for my back surgery, it was noticed that my gall bladder was full of stones.  So just when I was starting to recover from my back surgery, I ended up having my gall bladder removed.  This extended my recovery time and made it necessary to spend far more time being sedentary.  Parkinson's had definitely knocked me down again.

As I was starting to get back up from surgery recovery, the world went into lock down due to Covid.  My gym was closed and I was unable to do the workouts I needed to do to get back in shape.  I am not good at working out at home.  Some people like it.  I do not and find that I do not maintain a regular workout schedule unless I go to the gym.

Parkinson's and life knocked me down and tried to keep me down.  But it's 2022, and I have now gotten back up.  I have been doing a better job of maintaining my workout schedule.  I am still not close to being in as good of shape as I was before my back injury.  But I am back up and swinging, getting ready for my C4 Workout Challenge.

Many of you reading this are aware that I host an annual workout fundraiser for the Iowa chapter of the American Parkinson Disease Association, my C4 workout.  The first 2 years - 2016 and 2017, it was 4 hours long featuring the 4 workouts that I do on a regular basis - Dance, Strength training, Kickboxing, and Yoga.  In 2017 and 2018 it was 90 minutes long with each of the 4 workouts being 20 minutes long and a 10 minute intermission.  After 2 years of not having it due to COVID, I am having it again this year with the full 4 hour format returning.   It will be held on December 17th at the Lifetime Athletic Club in Urbandale.  See the sign up link for more information.

I have been knocked down.  But I have gotten back up.  I challenge all of you to come and try to keep up with me for a four hour workout and instead of getting knocked down, lets all knock out Parkinson's disease together.

https://apdaiowa.salsalabs.org/c4workoutforparkinsons0/index.html

5279 feet from Victory

 Many people dealing with Parkinson's may feel that they are "fighting a losing battle."  As symptoms progress, medicine dosages increase, and quality of life degrades, that seems to be the reality.  How do you decide if fighting any battle is worth it, and how would you know whether the outcome will result in a loss on your part?   If you decide that you are going to lose before you have reached the end, chances are that you will.

I think the saying that applies to my battle with Parkinson's is, "If you give them an inch, they will take a mile."   Parkinson's will beat you and take that mile if you let it do so.  So don't let it.  Don't give it an inch and don't give it a mile.  There are 5280 feet in a mile.  Take back some of those feet from Parkinson's, even if it is just one.  Victory lies in the battle itself. 

Exercise is clinically proven to slow the progression of Parkinson's.  Neuroplasticity is a medical term that means you can train your brain to reroute messages to your muscles and slow the progression of the disconnect between the brain and the body.  The more you exercise the more your brain will adapt.  Also, there is a medicine currently in development that promises to stop the progression of the disease.  I want to be as close to victory as possible once that becomes available.

You have a chance to beat Parkinson's and take back part of that mile.  Join me on December 14th this year for my 4th annual C4 workout to beat Parkinson's.  Let's fight together, and at the end of the workout we can stand side by side, only 5279 feet from Victory!

Challenges, Obstacles, and Determination

Challenges, Obstacles, and Determination

The sight of these long, curved stairs great me each weekday morning about 5:00AM.  I traverse them on my way to the second floor of my local Lifetime Athletic Club.  Each time I am reminded of the fact that for many people with Parkinson’s, these are an OBSTACLE that sends them looking for the elevator around the corner.

Once I get to the top and into my exercise, I have often thought about the many CHALLENGES that Parkinson’s has given me.  A short list is muscle rigidity, fatigue, lack of arm swing, left side limp, lack of smell, and facial masking.  Climbing steps is not yet a CHALLENGE for me.  But I am aware that one day they may be a CHALLENGE.  As I progress in my fight that CHALLENGE may become an OBSTACLE.

Having Parkinson’s has given me a unique perspective, and challenged me to think a bit deeper about things.  What is a CHALLENGE?  What is an OBSTACLE?  How are they the same?  Or different?  Dictionary.com defines a CHALLENGE as, "something that by its nature or character serves as a call to battle, contest, special effort, etc."  It defines an OBSTACLE as, "something that obstructs or hinders progress."

You could say that for people with Parkinson’s, the stairs call them to a special level of effort so that they don’t fall and injure themselves.  Once they reach a certain point it will hinder their progress enough that they will need to choose the elevator.  Although I can still walk up them just fine, I know that there is likely a day in my future where the elevator will need to be my route to the second floor.  Parkinson’s gradually kills the Dopamine producing cells in my Brain until I will lack the balance, agility, and coordination to climb them safely.  At that point, the elevator will be my chosen route.

How will I know when this CHALLENGE becomes an OBSTACLE?  In my current situation, climbing the stairs is not even a CHALLENGE.  So, I choose to make it one.  Each morning at 5:00AM you will see me not only walking up those steps, but charging up them two at a time, fists pumping and arms swinging defiantly.  I do this for a few reasons.  I do it to honor many of my friends with Parkinson’s who can no longer climb them.  I do it to get my workout started a bit early and get my body moving.  And, I do it to look Parkinson’s square in the eye and defy it to try and slow me down.  I say a phrase under my breath, repeated twice, once for each flight of steps.  “F-U Parkinson’s you woosie little disease. You’ve got nothing!”

Dictionary.com defines DETERMINATION as “the act of coming to a decision or of fixing or settling a purpose.”  How does this factor into the current discussion of CHALLENGES and OBSTACLES?  I believe that too often, people accept OBSTACLES into their lives when a different level of DETERMINATION could lead them to a different decision.  This applies to people with or without Parkinson’s.  I do not want to suggest that a lot of people with Parkinson’s should start tossing their canes aside and follow me up the stairs two at a time.  But sometimes, all it takes to change an OBSTACLE into a CHALLENGE is simply deciding that these stairs are not going to stop me.  It may be a significant CHALLENGE to overcome.  Your challenge may be Parkinson's, or something completely different.

I am reminded of the great Muhammad Ali when he said, “I have Parkinson’s Disease, but Parkinson’s disease doesn’t have me.”

I vow that in my struggles, the difference between my CHALLENGES and OBSTACLES will not be decided by a lack of DETERMINATION.  I invite you to defy your challenges to stop you.  Join me December 8th and together we'll take it two steps at a time.

https://apdaiowa.salsalabs.org/C4WorkoutforParkinsons

My Handsaw

Everyone has a family history by which they cannot help but be influenced.  I am no different.  My father a number of years ago started talking to his aunt, my great Aunt Betty, about our genealogy.  Betty had been doing research and had history going back a number of generations.  I have always been curious, but never enough to research it myself.  Instead, I prefer to be inspired by the story of my family, as told to me by my family.  I am also incredibly fortunate to have an object that I inherited to assist me in understanding it better, my handsaw.

After my paternal grandfather, Robert, died in 1994, my dad inherited a number of his tools.  Among them were a number that he inherited from his father, John Haas.  John Haas was the first Haas born in the United States.  His father, my great-great grandfather, emmigrated from Germany to settle near Guttenberg, Iowa.  As a young man, John moved from the Guttenberg Iowa area, to Southern Minnesota, near Sleepy Eye, MN, where I grew up.

John Haas made the move from Iowa to Minnesota in a wagon with two sets of tools, a set of knives for butchering livestock, and a set of woodworking tools to construct barns.  My handsaw, the handsaw that I inherited, came in that wagon from Iowa to Southern Minnesota.  In 2011, it made it's way back to Iowa when I moved  here with my family.  It was involved in the construction of barns between Eastern Iowa and Southern Minnesota and many other projects over the years.  It is etched "Pat. Pending June 23rd, 1874" on its blade, made by Henry Disston and Sons of Philadelphia.  Before any tool collectors get any funny ideas, let me assure you it is not for sale.

Throughout my early teenage years, I worked hard on general farm labor, later at the grocery store in Sleepy Eye.  I remember getting a raise at the grocery store that was a pretty healthy increase, like a quarter an hour.  The store manager put the idea in my mind about staying on after graduation and continuing to work for him.  I was never content with it, knowing that I wanted more.

I diverged quite a bit from the path that most of my family has taken.  Most of my family are very hardworking blue collar types.  I have a Masters degree in Engineering from the University of Minnesota.  Education through high school was strongly supported, but after that, college wasn't looked upon as necessarily a good thing.  It was expensive, and people with college degrees lacked common sense.  We were encouraged to continue with some education after high school, but learning a trade at a vocational school was more along the lines of what was expected.  An advanced degree in engineering was a foreign concept.

Although as a structural engineer, I have a career that doesn't require much physical labor, I still do most of my house remodeling tasks myself.  My career does give me a better than average knowledge base to draw from, so it is not completely unrelated.  I am around construction plans every day.  I was a do-it yourselfer before that was cool enough to have its own cable channel.  I use my handsaw at least once on every project possible.  Most recently, I used it to cut 2x4's that I am using to form the foundation for steps that I am making for a patio project outside my kitchen sliding door.  The history of the object that I hold as I do it never escapes me.  And that saw cuts better than any other handsaw that I have purchased.  Maybe it is because they made saws better in the 1800s.  I like to think that it has to do with a little extra effort being put forth by my great-grandfather.  I think he is pushing the saw as much as I am, its teeth removing the wood stroke after stroke under the influence of his muscle power as much as mine.

When I moved to Iowa in 2011, I was 41.  I told my wife that when I turned 82, I would be 1/2 Iowan.  I came to Iowa for work, changing my career focus from working on buildings in large cities, to work on projects in rural areas, many of them in the agricultural industry, amazingly similar to my great grandfather more than 100 years earlier.  As much as I like my career behind a desk, each time I use that saw to cut through a piece of wood, I am reminded how much satisfaction I get from a good days worth of hard labor.

I have done a lot of introspection over the last couple of years.  Having a serious disease like Parkinson's tends to bring that out of you.  My handsaw not only tells a lot about my family, it reveals how much I am influenced by them and their history.  I always thought I was a big city kid, not quite fitting in with Iowa.  It turns out that this is where we started.  I always thought I was so different from my family still living in Minnesota.  It turns out that I was wrong about my family and Iowa.  I am already 100% Iowan, and very comfortable being descended from hardworking folks who get satisfaction from physical labor.  My handsaw proves it to me.

Craig's 4 Part 4 Hour workout to Beat Parkinson's

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!