Thursday, March 31, 2011

Interview Day

Post 59
Martha and I are up and out by 6:15 am. We are on our way to Philadelphia for the 8am taping of Dr. A’s interview  about genetic research and Parkinson’s. We arrive with plenty of time for a coffee and pastry, then make the phone call that leads us to our super secret, special parking spot.
With the campus police aware that our car really does belong next to the dumpster, we are escorted into the building by Kim, a cheerful woman with the job title of Senior Medical Communications Officer. Martha and I are starting to feel very special.
We wind our way through the hallways, past impressive rooms full of “science” –y looking things, tables and drawers and big tanks of nitrogen gas. I am remarkably calm.
Dr. A greets us. “How are you, Mr. Spokane?” she asks.   
"I am remarkably calm” I reply.
“Judging your head twisting, I’d say you’re a little nervous.” She said.
Dr. A was right, of course. Anxiety makes my head twist stronger.  I would be absolutely no good at poker .
“Relax, this will be fun” she said as she walked down the hall to begin her part of the interview. Twenty minutes later, I was asked to join the interview.  Dr. A and I did our now familiar hand quacking, toe tapping exam for the camera. Then it was my turn in the interview chair alone.
The producer Cyndy McGrath, and I spoke briefly. She immediately put me at ease.  We were just two people having a conversation.
As the camera and lights went on, we continued to talk. Truth is, I don’t remember the questions I answered, but I know I was in the moment. The people with us said that we did fine.
Even Martha  got into the action. We were filmed walking down the hall, patient and caregiver together.
It was a milestone day. I have journeyed the path from denial of my Parkinson’s symptoms to a point were I speak openly about the disease. This blog, which was started as a lark, is steadily attracting readers in the United States and many other countries. I am pleased that I have a chance to connect  with interested readers.
The door opened and I shuffled through. There are unknown opportunities ahead because I took that simple action.

Interview Day
                         Michael with Dr. Alice Chen-Plotkin MD

Monday, March 28, 2011

The Invitation

Post 58
I opened my email several weeks ago and was surprised to find a message from Dr. A.  She said she had been asked to do a TV interview about her current research. (See my last post for a discussion of that research.) The TV producer thought it would make the show more interesting if a patient were involved. Dr A. asked me if I would like to participate.
If you have been following my story, Dear Reader, it might surprise you that I am reluctant to try new things.  A TV interview, no matter how small my part, would qualify as new and potentially stressful.  But, I have made a conscious decision to push past my boundaries of comfort and say yes to the new. I would participate, and say “yes” to both opportunity and life. I am learning that the key to coping with movement disorder is to just keep moving, both physically and mentally.
I can only live actively by pushing open new doors and shuffling through.  

Friday, March 25, 2011

Predicting Dementia in Parkinson’s

Post 57
I am developing that good old School Spirit regarding the hospital that treats me for my P.D.  If the research department held Friday afternoon pep rallies, I’d attend.  I would dress in school colors, wave pom-poms and cheer on my favorite players. Of course, the players would be in lab coats, and the game they play is about quality of life and the mitigation of suffering for patients just like me.
This collegial pride surfaced when I discovered that Dr. A was the lead author of a research study that garnered a lot of media attention. The study revealed the first blood test to determine potential cognitive impairment in Parkinson’s disease patients. It turns out that all that blood that I, and hundreds of others had been donating was being analyzed to find a biomarker that would signal future dementia due to P.D.
This is a first step in an effort to test medications that might preserve cognition throughout the progression of the disease. The biomarker would identify those most at risk to develop dementia, who would then be asked to take part in clinical trials. Having good potential test patients could lead to quicker evaluation of drugs designed to preserve cognition.
This is, admittedly, somewhat technical for this old carpenter to comprehend. All I know is that it’s a step in the right direction.
Meanwhile, I’ll keep cheering for the home team.

To read more about the study, visit:

Tuesday, March 15, 2011

Stepping up

Post 56
Martha, here.  The American Heritage Dictionary of 1976 defines caretaker as “One that is employed to look after or take charge of goods, property, or a person.”  Today’s Merriam Webster online dictionary defines it as “one that gives physical or emotional care and support”.  Just like me to find a job after it becomes an unpaid position.
 Although, Michael certainly doesn’t need caretaking, sometimes I have to step in.  Say for example, we are heading out to dinner with friends. I’m standing in the driveway, balancing the mashed potatoes with one hand and opening the car door with the other.  I have already gone back inside the house for keys.  Now Michael remembers that we need the cell phone to call ahead to our hosts. 

We are running late.  Michael’s pills haven’t kicked in yet, and he’s been walking like a woman wearing a tight skirt.  I know that it will take him five minutes to get upstairs for the cell phone.  I volunteer to fetch it.  After all, I have legs that go all the way to the ground.
Or, when I’m sitting in the dining room reading the grocery flyers, and all of a sudden, there is a rumbling upstairs.  Michael’s unmedicated gait, a rapid beating on the floor above, sets the teacups in the corner cupboard a’tinklin’.  Not much I can do but batten down the hatches and wait for the meds to kick in. 

"Uh, oh." I think.  I better make sure he didn't forget.

I walk to the base of the stairs and bellow, “Michael, did you take your meds?” Not too impressive as far as caretaking goes, is it?

Sunday, March 13, 2011

New Friends

Post 55
I drove to Philadelphia Saturday morning to attend a support group for newly diagnosed Parkinson’s people.  The group has been gathering on the second Saturday of the month for some time now, but I didn’t think they would mind if I dropped in.
I’m happy to report that I was warmly welcomed by the group, a collection of people that, upon casual observance, had no apparent reason to be interested in discussing Parkinson’s. We could have been a meeting of the local bird club, except that we forgot our binoculars.
Then we sat down and started to tell our stories. We didn’t talk about birds. We talked about symptoms and prescription meds. We shared our hopes and fears tempered with an abundance of optimism. Everybody had their own story, their own symptoms, suffered their own side effects of medication.
Parkinson’s, it seems, is a very personal journey.  No two people experience the inevitable depletion of dopamine in the same way. During sharing it was clear that there were also different reactions to the diagnosis.  But we weren’t listening for the differences.  We all shared a disease in common, and listened for those things that offered us a better way forward.
In birding, it is often better to go out with a group. There will be someone who can identify the bird that is strange to you, or hear the grouse in the distance and know what it is.  So it is with all groups.  You benefit from their experience and take it home with you.
Thanks for being there, new friends.

Wednesday, March 9, 2011

Martha Speaks

Post 54
Martha checking in here.  I thought it would be good to add my voice to Michael’s Adventure.  After all, I am along for the ride.
Thus far, there has not been much for me to do in the way of caretaking.  He is not disabled to the point where I have to pick up on his chores.  There are some things, in my opinion, he shouldn’t do anymore (like climb up on a ladder and paint the attic windows) but he does them anyway.  So it’s not like I’ve picked up any extra work. In fact, he pitches in more on the small chores since he spends more time at home.
What I have to do is move more slowly and wait.  This has been from the very beginning.  The first symptom that was evident to me was his apparent inability to keep pace on our regular walks.   I’d be walking along and suddenly realize he was falling behind. 
“Come on, Mike, keep up.” I’d say, with some impatience.
“What’s your hurry” he’d reply.
We studied his gait to try to understand what was happening.  His arms hung down at his sides while he walked.
“Swing your arms,” I told him.
He’d swing them, but it was unnatural.  His steps were one-two, one- two and his arms swung, one-two- three, one-two-three.  He had to ask me which foot went with which arm.
Once we got a diagnosis, I accepted his slowness. Medications returned his arm swing to almost normal. 
The biggest negative to date in this Parkinson’s adventure is that we’re both gaining weight.  Michael has always been my exercise partner, but now that the dynamics have changed, I’ll have to adjust our diet  to match. I do insist that we continue to exercise and walk, but I have to pull hard on the leash to get him out.
Funny thing is that once he gets out, he loves it. 

Saturday, March 5, 2011

Another Round for the Team

Post 52
Dear Reader may wish to reference Post 38, Taking One for Team P.D. In the post I describe a P.D. study that I am involved in and the travails I suffered first time around.
Well, at this visit to the clinic, I met again with Dr. PhD who collects data for the study. He asked a series of questions for my Parkinson’s evaluation. Then, I was asked to remember a series of words and repeat them back. I passed those sections of the test. I didn’t do as well on “Subtract seven from one hundred and seven from that, and so, on until you reach zero.”
Then came “Name as many animals as you can,” and the fun began.
“May I name birds?” I asked. “Sure” said Dr. PHD. With pen in one hand and a stopwatch in the other, Dr. PhD would record all the birds as I named them.
In my mind, I went to the Sibley Field Guide to Birds of Eastern North America. The guide covers 650 bird species.  Martha and I have been actively chasing birds for more than seven years.  I know most of them.
I began, “Osprey, Mississippi Kite, Red tailed Hawk, Sharp-shinned Hawk, Cooper’s Hawk, Northern Harrier.”  Dr. PhD. scribbled furiously.  I moved to the Woodpeckers. “ Red-headed Woodpecker, Red-bellied Woodpecker, Downy Woodpecker, Hairy Woodpecker, Northern Flicker, Pileated Woodpecker, Yellow-bellied Sapsucker.” I stopped.  Dr. PhD was way behind, but kept on writing, a small smile appearing slowly on his face.
Martha, sitting beside me, was already grinning. She knows that I can’t pass up the opportunity for humor, especially at someone else’s expense.
Dr. PhD put the paper aside. “I’ll count these up later” he said.
“Great” I said. “Next year, may I do Ducks?