Be Kind

Thought for the day: Be kind, for everyone you meet is fighting a hard battle.  In the last few weeks I’ve been overwhelmed with the kindness gifted to our family as we attempt to navigate the uncharted waters of working with hospice as we approach the end of Dad’s hard fought battle with Parkinson’s disease.  Our friends, family and hospice team have been amazing, and their kindness has been the support we continue to lean on to stay upright and on course.

I’ve been equally grateful for the kindness of strangers, those individuals and businesses who don’t have a clue what is going on in our lives. I imagine that many of the businesses and people I work with have this mantra in their customer service handbook or plastered in the breakroom, because they and their teams demonstrate this behavior regularly.  

I’ve also been horrified by the cold and rude behavior from people in the death business. I guess I expect a little better from funeral home staff since this is, after all, their business.  

If I were to draw a business lesson (or life tip, your choice) from all of this, it’s BE KIND.  Never underestimate the power of a smile, of patience, of validation.  And be careful not to  understimate the power of the eye roll, big sigh, and furtive checking of the clock.  They take the same amount of energy, but one wil earn you a customer for life and the other will cost you.

Be kind.

P.S. If you need a referral to an amazing hospice team, credit union, in home care company, or any other business in Idaho’s Treasure Valley area who lives “Be kind” please message me.

The Silent/Silenced Ugly Truth About Parkinson’s Disease

You almost never hear anyone in the Parkinson’s community say that you will die from this disease. In fact, the rally cry is, “I won’t die of Parkinson’s, I’ll die with Parkinson’s.” This is a powerfully positive message that is absolutely critical to those in the earlier stages of the disease, and I applaud all those who fight the good fight. I pray that it is true for them even though it stabs me in the heart every time I hear it.

You see, there is another side to the Parkinson’s story. The Ugly Truth that is silenced…both by those who mean well and chide you about not being negative, as well as those of us that self-censor. We don’t want our early onset friends to get discouraged. We don’t want people to think we’re negative. We don’t want to acknowledge the truth…people DO die of Parkinson’s. We are the caregivers for those with Avanced Parkinson’s. We have a front row seat to the end game. The ugly truth about how Parkinson’s slowly takes your life slaps us in the face every day. So we keep this truth to ourselves. We cry together in secret Advanced Parkinson’s Caregiver support groups. We hide our Parkies away to protect what is left of their dignity. We don’t talk to the rest of the Parkinsons’ community about being unable to walk, bedridden, unable to feed yourself, bathe yourself, toilet by yourself, or even remember yourself.

I believe that someday we will identify many types of Parkinson’s disease, each with it’s own progression. Until then, we’re all lumped in to one shaky bucket and ALL our voices are needed at the table. Only by telling the whole story, including both ends of the disease spectrum, will we truly raise awareness of this disease.

I’ve wanted to post this for a long time now. I know that I will get a lot of flack from the early onset community. Know that I love all of you. I will fight with you, and for you, until the day we find a cure. To my fellow Advanced PD Caregivers, you are not alone. It’s time to tell our story.

I’m not shirking my responsibilities…just procrastinating.

I am Japanese-American by birth and culture. We don’t stick our old people in some random facility when they become “inconvenient” to care for.    We are raised to believe that not only is it not an inconvenience, it’s an honor and privilege to care for them as they reach the end of their life’s journey.

So imagine how offended I was when our VA social worker told me it was my responsibility to start researching facilities now, as well as update all of our documents.  Poor Virgil, he got the full brunt of my, ” we don’t need to do that, we just remodeled our house with a wheelchair accessible bathroom, ramps, etc.  He very calmly listened to everything I had to say, and then said again that it was my responsibility to my 100% disabled Veteran with Parkinson’s disease that I find out what our options were BEFORE we needed them.  His words still ring in my ears, “by the time you need it, it will be too late.”

And he is right.  Like many of us, either adult children or aging seniors, we put off making these plans because they are incredibly unpleasant to think about or discuss. We wait until things are a crisis to make life decisions.

And since I’m not one to shirk responsibility, I quit pushing back and dutifully took notes of everything we needed to do.  I procrastinated a few weeks before getting Dad’s Advanced Directive and Medical Power of Attorney updated (yucky conversation, let me tell ya).  And while every fiber of my being wants to cancel or reschedule, I have an appointment tomorrow at the Veteran’s Home to do our homework and explore our options.  Wish us luck.

TRLB

Accidental Inventor–I’ve fallen and no one can hear me

A month or so ago Dad took a bad fall.  He’d been trying to get a warmer shirt out of the closet when he lost his balance and fell.  It was just after midnight.  Many people with Parkinson’s have a soft or low voice, including my Dad.  Add to that the clothes absorbing some of the sound, and that mom was in a deep sleep…Dad was on the floor for almost four hours.  (Our room is on the opposite end of the house so we weren’t any help either).

I was telling my friend (who has a family member that works at Hughes Security Solutions) about my idea to prevent that long wait for help from happening again. She also has experience caring for a loved one with Parkinson’s, and was eager to help.  There were several small personal alarms to choose from.  I picked out the one I thought would fit best on his walker leg. It cost just under $18.

I chose this alarm because it works like a grenade…pull the pin and it goes off.  If Dad’s tremor was extra bad, or he was too weak to hold down the button, all he’d have to do is pull the cord. Also, the pin never comes all the way out, so you’re in no danger of losing it.  A simple tap to push the pin back in turns off the alarm.

Step 1: I moved the wrist cord to the pin.  This would be tough for someone with PD to do themselves, and I admit my efforts aren’t the prettiest, but it worked. I used a pair of needle nose pliers to remove the ring holding the cord, as well as the cute rhinestone charm off the pin. Moving the cord ring to the pin was more challenging than I’d thought, but it’s functional.

(This particular model also has a motion sensor option.  I made sure that switch was in the “off” position, and closed the sensor cover.)

Step 2: I attached the alarm to the front leg of Dad’s walker using 3M Command Picture Hanging Velcro strips.  (about $4 for a package). I attached it high enough above the wheel that there is no risk of it being accidentally activated, but low enough that if he was on the floor he’d be able to reach and pull the cord.

Hopefully we won’t need to use this, but it does give us peace of mind that should this happen again Dad won’t be on the floor for hours.

TIP: Make sure to remove the batteries BEFORE starting your engineering work…otherwise your family will be subjected to 100 decibels of shrieking alarm.  This model has a slide off battery cover, but some have tiny screws that may be difficult to maneuver.

Moving from Awareness to Action: The Accidental Advocate Meets Other Accidental Advocates

Today marks the beginning of Parkinson’s Awareness Month…everywhere. April is officially World, US, Idaho, and even Pocatello and Chubbuck Parkinson’s Awareness Month. We’ve come along way from the days where no one had really heard of Parkinson’s to a month of worldwide recognition of the need for a cure.

As I continue my own journey of Awareness to Action, I’ve been blessed to meet many kind and wonderful people along the way. Each of us has been touched by this disease, and chosen not to let it defeat us. Each of us has chosen to contribute our individual voices to join a unified chorus demanding a cure. Each of us has our own story, and our own way of making a difference. From those who wake up every morning and smile through the tough times as they deal with the reality of life with PD, to those that make sure they are being the best caregivers they can be.

Advocates in action include Holly, Mary Jo and Bette, caregivers themselves who donate their time to bring the latest in research and information to the members of their local support groups. Together we have launched a grassroots education campaign here in the Treasure Valley to let Doctors, Nurses and Physical Therapists know that there are not only patient resources available, but also ongoing education opportunities for them as providers.

Advocates in action include Victor and Wendy Baron, founders of http://www.ipdsg.org. Motivated by their own experience with misdiagnoses, they have created a non-profit organization dedicated to educating medical providers in Idaho about Parkinson’s Disease, as well as being an on-line clearinghouse for patient information.

Advocates in action includes…you. Your voice. You don’t have to have PD, or have a loved one with PD to make a difference. You know me, so you know at least one person whose life has been changed forever by PD. I ask you to support Parkinson’s Awareness Month by registering as an advocate at http://www.parkinsonsaction.org. It’s as simple as a few minutes a month, responding to an action alert. PAN does all the work for you. They send you the action alert, you put in your zip code, they give you an email template or talking points, you hit send. That’s it. I’m asking you to make the move from awareness to action…to advocacy.