Content

I’m Jeff, and having had Parkinson’s disease for 6-7 years, am trying to understand how this has become my life. By training, I am a dentist. By serendipity and God’s good graces, husband to Teresa (28 years). By way of blessing (and punishment-lol), father to 4 sons, 24,22,20 &15. I have served our country for 24+ years, 3 as an Army dentist, 4 in the reserves, and 17+ on active duty as a Commissioned Officer of the US Public Health Service. I’ve been detailed to the Federal Bureau of Prisons, providing care to murderers,rapists, terrorists,mob bosses and gangsters. Always very active physically, never dependent on anyone, responding to emergencies like stabbings, assaults, mini-riots, and escape attempts.

And then I had a visitor. This was an uninvited visitor that would pop-in occasionally. My friend would not stay long but was the kind of visitor that quickly wore out his welcome. The big problem was when he would pop in and stay too long. Pretty soon he brought friends with him.

In 2000 or 2001, I was 43 and knew I wanted to stay healthy. I would run 2 - 4 miles a day, lift weights 2-3 x weekly. My unwanted visitor first showed up as a cramping up of my right foot after 5-10 minutes of running. I’d have to stop and let it relax, as soon as I would start again so would the cramp. I figured I needed new shoes. Then I noticed my right arm wouldn’t swing when I walked. It just hung there rigidly.

In 2002, enough was enough. My penmanship degenerated to where the words would get smaller and smaller as I would write. During oral surgical procedures that required force, my entire body would shake. My staff tried to make light of it - they called me shaky Jake. The right foot cramping was constant, making simply walking an exercise in pain.

So, I did the unthinkable for a man. I went to the doctor which gave me a whole set of new friends. People like my orthopedist who said finally, “I don’t know what is wrong with your foot.” He is the smartest doctor I ever have seen. Except he referred me to an orthopedic foot and ankle specialist who worked for the Indianapolis Colts, Indiana Pacers, and any number of university athletic programs. Needless to say I had right foot/ankle surgery February 13, 2003 to correct an anatomical problem causing my right foot pain. I’m here to tell you surgery does not cure foot dystonia from PD. The incision included the tendon that attached to the part of my foot that would cramp, causing tension on the line of incision. A four week recovery took one year!

In the meantime after ruling out brain tumor, etc., a neurologist diagnosed me with essential tremor, a non-progressive intention tremor that runs in families (my dad has it, so did Katherine Hepburn with that shaky voice) and starts on average at age 45.

And then finally at last I met my visitor who now lives with me. On my birthday (hard to forget), December 2, 2003, a movement disorder specialist introduced me to Young Onset Parkinson’s Disease (YOPD).

After fighting to keep working from 2003 - 2007, I’m throwing in the towel on dentistry and active duty. It’s time to move on to new challenges, new adventures. Since 2003, I have tried over thirty different meds and combination of meds to keep working. Today I take 16 pills a day related to PD and its effects. The hard part is the giving up of certain things you used to like to do. My meds affect my judgement, make me sleepy (I was recently diagnosed with narcolepsy), so I don’t drive too much. You have good days (”on” days or times in PD speak) and bad days (”off” times where the meds just don’t quite do it).
PD is caused by a loss of dopamine producing cells in the substantia nigra of the brain, the neurons die and we don’t know why.This doesn’t just cause the classic TRAP of PD: tremor, rigidity, akinesia/bradykinesia, and postural instability. It also has affects on your psyche, causing anxiety, depression, even dementia in the advanced stage. It affects your autonomic nervous system, things that are involuntarily controlled or auto-regulated. I can’t stand temperature extremes, have digestion troubles, and have an exaggerated startle reflex(fight or flight).

YOPD sounds terrible. Horrible. It isn’t. Or better, it doesn’t have to be. It makes you slow down. You are forced to sit and think. And pray.

Most people with YOPD (100,000 out of 1 million PD patients in the US) don’t die from it but live a normal life span. Advances in treatment bring better meds and the possibility of a cure. So it probably won’t be my demise (unless I drive off a bridge after falling asleep!)

The hardest thing for me is letting go, letting others do for me, do things I used to do for myself and my family. One example: Teresa and I get a phone call from a couple we know on a Saturday morning of a three day weekend. The wife says, “my husband and I will be over in 15 minutes, will you be home? I’m going to paint your kitchen and dining room while my husband cleans up your 4 acres. Is that ok?” Wow. I mean, WOW. A part of me wanted to say no because of pride and that fierce independence I’ve always had. But I let go, let these two wonderful people help us. I couldn’t even help that day (meds were “off”).

Laurie, our moderator, had asked me to write something about PD and me. I hope I have because I’m usually loathe to talk about myself. A final thought: for all of us with life-altering conditions, unwanted visitors that won’t leave, consider that maybe, just maybe this visitor was sent for a reason.

I’m Catholic and have deepened my personal relationship with Jesus through this disease. I have always believed that as Christians we are called to be of service to each other. Jesus says in the Gospel of John 13:14-15, “If I, therefore, the master and teacher, have washed your feet, you ought to wash one another’s feet. I have given you a model to follow, so that as I have done for you, you should also do.” Well, I can’t bend over to wash another’s feet. But I can let someone else wash mine. In allowing someone else to be of service to me, in letting go, I am assisting in God’s plan, helping that other person be Christ for me. If there were no sick, lame, helpless, needy, then to whom would people be of service? How would they be like our role model, Jesus Christ?

So perhaps your unwanted visitor has come to stay for a reason. This gives me hope and helps me accept my limitations. I don’t like PD but I also don’t necessarily like being bald, unable to speak Italian or not playing for a major league baseball team.

“Reflect on your present blessings, of which every man has many; not on your past misfortunes, of which all men have some.” Charles Dickens

The nine most terrifying words in the English language are, ‘I’m from the government and I’m here to help.’
- Ronald Reagan

This quote is a corollary to that which Henry David Thoreau said, ” government governs best which governs least.” In our world, anytime that anything untoward occurs a hue and cry arises to invoke a governmental solution. Matters that should be handled by private citizens, local governments or state governments, are demanded to be solved by the Federal government. Our founding fathers did not design the constitution to work in this way.

Just ask the victims of hurricane Katrina which occurred two years ago. House after house, neighborhood after neighborhood, block after block, one still sees the cruel devastation and lack of action. In many neighborhoods, the houses lie abandoned with the occasional FEMA trailer parked out front. Where are the people? They wait in FEMA trailer parks, with relatives, and in other towns. They wait for government assistance and intervention. The program authorized to bring these people home and disburse billions in Federal relief is a hazy gumbo of government mumbo-jumbo gone bad. The citizens of New Orleans reelected the very man who bungled the hurricane preparations, evacuation, and aftermath reaction. Elected official after elected official has been accused, indicted, arrested, and convicted in Louisiana. Governmental agencies charged with rebuilding the Levee system are rebuilding a category three system which failed under the pressure of category three Katrina. What happens when the next one is a category five?

Those citizens who have succeeded in recovering have done so on their own. They did not wait for help but pressed forward with the resources they had to reopen businesses and rebuild houses. These are the true entrepreneurs, risk takers. And that is the crux of my argument, that rebuilding New Orleans is a huge risk. Living below sea level, basically unprotected from a storm surge, and certain to be hit with a hurricane in the future, only the hardiest of risk takers should attempt to live in this setting.

The Federal Government owes its citizens life, liberty, and the pursuit of happiness. These are inalienable rights expressed in the Declaration of Independence but are not a guarantee of happiness. If it makes you happy to pursue living below sea level in a hurricane zone, then you have the inalienable right to do so. However, you have no guarantee of attaining happiness and should not expect such a guarantee from the Federal Government. The Federal Government provides best in its obligations by providing for a national defense and ensuring a stable currency to allow the economy to function. When it does these two things, people are free. Free to achieve or fail, free to express themselves, free to pursue happiness.

The American entrepreneurial spirit is summed up for us in the words of Abraham Lincoln, “Intelligence, patriotism, Christianity, and a firm reliance on Him, who has never yet forsaken this favored land, are still competent to adjust, in the best way, all our present difficulty.” He does not mention intervention by a Federal Government to save us from our “victim status”.