Stories

Brian's Story

What the What?!

Diagnosed at 42

I was diagnosed with Parkinson’s disease at the age of 42. April 29, 2011 at 10:40 AM is when the news was delivered.

I treated the doctor appointment like a business meeting. For me the meeting was more about the topic and not about me. Doris and I sat there engaged in conversation with the doctor. What did you say? What does this mean? What’s next? The meeting ended and I went back to my office. What a mistake that turned out to be. When the first co-worker asked how the appointment went, I crumbled. I should have just gone home.

How did we get here? In January, I was having problems with my right hand. On a few occasions I was unable to make my fingers move. Since I use a keyboard and mouse for my job the thought was I had Carpel Tunnel. So through the maze of Occupational Medicine I went. Doctor visits every two weeks. Exam after exam. Doctor after doctor. X-rays, lifting restrictions, physical therapy, muscle relaxers and a wrist brace.

Then during one visit, the doctor that was more interested in telling me how he played tennis with someone I know, told me in a bit of theatrical performance that he thinks I have Parkinson’s, MS or a few other things. He arranged for a visit to a neurologist. In between this I visited my primary care doctor. His take on the matter, “You don’t have Parkinson’s.” While visiting the neurologist he observes muscle rigidity in my right arm, lack of arm swing while walking, tremor and fine motor skills problems. As I learn, all of these signs are classic textbook symptoms of PD. How did the other medical professionals miss this?

This guy truly cared. He sent me for a MRI to rule out “structural cause.” Structural cause in my head?! All I could think was this was getting serious darn fast! It was just my luck that the MRI appointment could be arranged for the next day. The results of the MRI ruled out structural cause. His diagnosis, Parkinson’s. Many weeks later I was able to visit with a local Parkinson’s clinic. One exam and two specialists’ later they too conclude its Parkinson’s.

Since then, I have learned a lot about Young Onset Parkinson’s disease (YOPD). With this knowledge I am able to look backwards and recognize the signs. Excessive shaking/shivers in the right arm when cold, losing (most of) the sense of smell, excessive sweating, problems writing and using a fork. Before being diagnosed I thought of these things as odd and signs of turning 40. From this vantage point these signs are like beacons at night. At least it all makes sense now!

What does this mean? PD is movement disorder caused by the brain not producing (enough) dopamine. It is a progressive neurodegenerative disease for which there is no cure. Someday the symptoms will affect my right leg, them my left arm and leg. Other conditions will also affect my mobility. What’s next? I will be making friends with others who have YOPD. Learning from them about their experiences. Sharing my story with them too. I am not the kind of person to just stand on the sidelines watching. I am sure I will become involved with some local and regional support groups. I will be living every day like any other day pre-YOPD. Admittedly, some things I will be a little slow at. When telling a friend about this situation he said to me, with a look of disbelief on his face, “You like a good challenge. You like to be challenged. You’ll do alright”. I shall maintain a positive mental attitude. I have places to go, people to see and things to do. As with all illnesses there is always hope and advancements in medicine. We will be following the medical research world as they work towards a cure.

In August my wife and I were able to attend a support and educational event hosted by one of the large PD organization. I expected it to be an emotional day. Seeing about 350 other people with PD was sobering. Many of them had symptoms far more advanced then mine. Looking at them was like looking into my future. I was scared. As we moved from session to session I started seeing myself. Mostly guys with the signature cocked right arm. We were blessed with the opportunity to meet the founder of this organization. We shared out thoughts about the day. I left the event knowing there is hope and many caring people looking for a cure.

If you have any of the symptoms I spoke about, go see a doctor. Go see a neurologist! Go visit the www.youngparkinsons.org Website.

7 Comments

Brian I have no insight to offer you but prayers and hope do go out to you and you family.

merrill, Dec 2, 2011

reply

Brian,

One day at a time man. Try to keep the humor levels up. Like joining a club.

Dave B. Seattle

David B., Dec 8, 2011

reply

Brian -- I have found that core strength exercising has changed my PD life. My ADL scores have continually dropped since i started exercising two years ago -- when i first began the meds, my score was 21, at my latest visit in October, they were 11! I don't know what the secret is with exercise, but I believe it is an important part of the treatment for PD.

Pray for something that STOPS the progression. Hang in there!

Jan

Jan, Dec 16, 2011

reply

I have found extreme exercise daily helps a lot. Also competitive sports like wrestling produce dopamine.

Albert, Dec 18, 2011

reply

Intense exercise every day including weights and stretching. Also try wrestling, it builds dopamine and is a very intense workout.

Allen Roan, Dec 18, 2011

reply

Brian, my thoughts and prayers are with you. I am hopeful that something good will come out of this. Let me know if there is anything that I can do for you as you continue down your journey.

Merry Christmas!

Keith McCallum

Keith McCallum, Dec 21, 2011

reply

I agree with others that intense exercise is key, but I would add that doing exercise that you really enjoy is most helpful. For me that would be hiking, biking and canoeing. If the weather is bad and I can't go outside, then an indoor exercise program along with good music or while watching a good T.V. Program makes it more enjoyable. Experiencing joy is so important. Keep positive and uplifting things and people around you.

Kim DeLong, Dec 28, 2011

reply

Participate in the discussion and share your insights

In reply to:

cancel