Andreoni Research

MY PARKINSON’S

In May 2008. I left the neurologist’s office with my diagnosis. The tiny quiver in the little finger of my left hand? Parkinson’s disease. It was a month before my 49^th birthday.

The years since then have been some of the most tumultuous and painful years of my life, but also have brought me the deepest love and the most precious friends any person could hope for. They have been years of greatest worry and despair, and years fill with the most precious memories. Some of my most creative work came out in these years, and I have published several well-received papers. But I have also missed more deadlines and disappointed more coauthors and editors than I can count.

My latest psych evaluation (a grueling half day of tests of memory, executive function, and inhibition) from last spring revealed that, in the six years since my last eval, I have only gotten stupider at the same rate that anybody my age gets stupider. That was my proudest accomplishment.

Many people ask me what it feels like to have Parkinson’s. There is no easy answer. The medications are a miracle in that they stop the pain, stiffness, and slowness. But this new “normal” is still totally different than the old normal. I take medicine every four hours. When they have my dopamine at its peak, I’m agile, quick witted, and very verbal—far moreso than the shy Jim from Wisconsin I used to know. When the dose is running low or, heaven forbid, if I’m late taking it, it is like my blood is replaced with sand and my muscles get invaded by termites, while my speech become breathy and slurred.

But even these descriptions are inadequate, as there really are no words that can have common meaning between you and me, even if you have PD too. Everyone experiences PD differently. While many of us have sleep issues and stiffness, we each experience them differently. Every person with Parkinson’s is truly alone…. But maybe this is just an awareness we share that is actually true for everyone, with or without PD. These regular reminders to love well and embrace every joy, small and large, is one of the gifts of PD. Annie and I, after being married just four years, have been careful to build and document a trove of memories. We’ve done so much – from travelling the world (eight countries together so far!) to ocean swims in La Jolla Cove. We even made a day of crossing all of San Diego’s walking bridges over the canyons!

A few days ago, Annie showed me a website produced by Pamela Quinn, a former professional dancer, who is about my age and has had her PD diagnosis almost twice as long as I have. That makes us both “early onset” people with Parkinson’s. In additions to stories about others with early onset PD, she has made several short films of dances she and others have performed about having PD. These performances are the closest thing I have found to telling my own story of living with PD. It also gave me the final bit of courage and community I needed to post this on my webpage.

The blog is called PD Movement Lab. There is a lot of good reading here, but the dances are especially compelling, at least to me. For these you visit the PD Art tab on her blog. The first piece, Welcome To Our World is lovely, but With Grace is the one that speaks to me and, in this case, my friends, the dance is also the best “words” to speak for me.

Thanks for reading this, and thanks for listening.

MY PARKINSON’S UPDATE, APRIL 8, 2019

I have had so many emails and phone calls from well-wishing friends after “going public” about my degenerative brain disease, I almost wish I had something else going wrong to surprise you all with. But this update is filled with good news.

On January 24 I had a surgery. A brain surgery. Yes it sounds scary and it isn’t even happening to you! This surgery has been the standard of care for people with Parkinson’s who have gone about as far as they can on medications, to the point that medicine is giving them more problems. I was up to 13 and ½ pills a day and was having a devil of a time keeping my dopamine levels steady---I bounced from crippling pain to involuntary movements (I would sway or talk too much or become a bit obsessed over minor details…I know, sounds like a guy who has had tenure too long). I wasn’t happy. And I was making Annie exhausted.

On January 24 I had holes drilled in my skull---one on each side---and wires directed to an area deep in the center if my brain about a quarter of an inch square. On January 29 I had a battery pack inserted between my skin and my pectoral muscle on my right side. The wires in my brain and a ipod were connected to the battery (the wires go under my skin but luckily the ipod talks to the battery with Bluetooth). Then for Annie’s birthday present, on February 6, I met my new neurologist, Dr. Lessig, and we turned me on!

Now the battery runs 24 hours a day to send electrical pulses to my brain. My condition is now relatively stable all day long. My medications have been reduced to 3 pills a day. I feel good enough to do some writing, and have made some progress on a book. I now have energy to treat Annie like she’s the woman I’ve always loved (because she is, you know). I’ve started sleeping through the night again. I have very little pain, and the bit I do have is usually cleared up with a small adjustment to the charge from my battery.

When I was contemplating surgery, a friend I have made in the PD community described it as, “your best day on meds, every day.” In the last two months I have been back to see Dr. Lessig five or six times to have my settings checked on my battery. The last time was three weeks ago. Tomorrow we go again. This time I expect she’ll turn me lose a lot longer. Maybe 2-3 months. This isn’t a cure, and this didn’t make me feel 30 years old again, but now my every day is like my best day on just meds. I know this won’t last forever, but now I have the space to appreciate this and the other gifts life has given me. I’m not lucky to have been given Parkinson’s, but I am lucky in so many other ways---I see now the need to live from a place where the light of the love and friendship that so many have shown me puts Parkinson’s in a shadow, and not the other way around.

Thank you all. Thank you for showing me your light.