A Transitional Decade



Mom (left) and Diana decorating
Christmas cookies, Dec 09

April is Parkinson's Awareness month, and it also marks the ten-year anniversary of Mom's diagnosis (for more about the disease, see my "Bonnie and Parkinson's" page).  When I first found out, I was halfway around the world and halfway through my semester studying in England.  Although it didn't come as a total shock, it was certainly unsettling.  In my journal from that time, I wrote, "...all the signs are there, I've known for quite some time something was wrong but I just didn't have a label for it and now it's Parkinson's Disease.  That is why she walks with her arms hanging in front of her, has no facial expressions, sometimes loses her balance, is losing her handwriting ability, and is just SO SLOW with everything." 

She actually doesn't walk with her arms hanging in front of her now, or maybe she never did, or maybe I'm just so used to it- I can't remember, and that makes me sad.  It's hard for me to think of mom before Parkinson's, even though I try to be mindful of reminding myself that it's only a diagnosis; she's still the same Mom.  Yet it's a huge part of her, and therefore my, life.  Weekly trips to an acupuncturist in Uptown have helped more than anything, but isn't covered by insurance and isn't exactly cheap.  Yoga has become even more important, as it challenges her brain and body to coordinate in new ways.  Even though she claims to hate it, she chugs a glass of V-8 juice every day to avoid taking a sodium pill, which raises her blood pressure in hopes of avoiding white outs.  I know that every time I come over, I'll give her a ponytail because she can't maneuver the rubber band, and she won't have to worry about her hair for the next day and a half.

I don't notice people with visible signs of Parkinson's out in the community very much, which seems odd considering that more than a million Americans are affected by it and 60,000 more are diagnosed each year.  When I asked her neurologist why, he said that, frankly, the symptoms are so visible (it's hard to hide shaking hands and shuffling feet) that many people with PD are intimidated or embarrassed to go out regularly, and the associated depression doesn't help.  In addition, they may need help with ordinary tasks and not be comfortable asking a stranger for assistance.

I have always been impressed that Mom hasn't let her diagnosis hold her back.  If she's alone and needs help putting her coat on before taking the dog out, she will go outside and stand on the sidewalk, and within minutes a neighbor or fellow dog walker will offer assistance.  If she's at a restaurant with friends, she will ask them to cut her chicken or open a sugar packet for her.  It may take her 25 minutes to get dressed in the morning and another 5 to put her shoes on, but she has a flexible schedule and her independance is the one thing she's afraid of losing more than anything.  Instead, she accommodates by wearing shirts with wide head openings and elastic waist pants that are easier to get into.  If she's late for an appointment, it's not the end of the world, and it's more important for her to get out and socialize.  If the people in line at the grocery store get impatient waiting 30 seconds for her to get her credit card out of her pocket, well, that's their problem. 

I really am kind of dumbfounded that it's been ten whole years.  It's been somewhat of a roller coaster, and I do worry every time she drives, trips over the dog, has a white out, or sleeps for 16 hours at night.  Her neurologist is pushing deep brain stimulation (DBS), a very invasive procedure that is supposed to have good results.  We'll cross that bridge when we get to it.  For now, one day at a time seems to be working.  Still, I'll glad to be around.  Ten years ago, lying in my dormitory bed in England, I wrote, "She seems really positive whenever I talk to her- I hope it's not a front.  Diana (her best friend) visited her yesterday.  I hope she gave Mom a hug.  I want to give her one..."