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.

November is Family Caregiver Month

http://www.caregiveraction.org/national-family-caregiver-month/

According to the Caregiver Action Network, there are as many as 90 million family caregivers in the U.S. today, and two out of every 5 adults are family caregivers. 39% of all adult Americans are caring for a loved one who is sick or disabled – up from 30% in 2010.

Whether it be caring for aging or ill family members, children with severe conditions, or Wounded veterans, family caregivers provide a staggering $450 billion dollars a year in unpaid health care. And these caregivers are women, men and even children performing complex medical tasks with little to no support. The physical and emotional toll on family caregivers could fill volumes, so let’s focus on the economic impact to small businesses and local economies.

Business owners please ask yourself…if two out of three adults are in a family caregiver situation, how many of your employees are (or will be) impacted? And, more importantly, what is your business doing to adapt?
I’m blessed to work for a company that does everything possible to accommodate family caregivers (like me), with flexible work schedules, job sharing and remote access. But what about those positions or functions that need a body in the office? If your business hasn’t been impacted yet, count yourself lucky. Protect the investment you’ve made in hiring quality people by coming up with a plan now.

Politicos please ask yourself…if a family caregiver takes a lower paying job or stops working altogether, how does that impact your local community? If I miss work for my caregiver responsibilties, no matter how accommodating my employer may be I make less money. Less money made means less money spent-less restaurants visited, less boutiques shopped at, less cars purchased. Are you getting the picture? We need to find a way to take care of businesses who take care of their employees, and we need to find a way to help families who are already struggling under the huge financial burden that comes with being a family caregiver.

Please look for my portion of the $450 billion donation on my next tax return.

APRIL 11TH, WORLD PARKINSON’S DAY

Today is World Parkinson’s Day. I’m asking each of you to take a moment to think about what life would be like if you, or someone you loved, had Parkinson’s disease. Think about it would be like if suddenly the brakes went out on your car while you were driving…no matter how hard you hit the brakes nothing changed. Or, that you were carjacked and no longer in control at all. Crude analogy, but that’s Parkinson’s.

I DON’T WANT YOUR MONEY! Yes, I ask each of you to consider donating whatever you feel you can, but know we all have our own causes we are passionate about. While funding is a big part of that, equally important are things like signing up to be an e-advocate and raising awareness about what this disease does to individuals, families, businesses and communities.

You don’t have to contribute financially to contribute…call a friend or family member caring for someone with Parkinson’s and thank them, bring in dinner, offer a break, mow the lawn, anything. If you see someone struggling (it’s not always a tremor, it’s often freezing in place as well), ask if they need help. Or just get online and learn something about this disease because 9 MINUTES FROM NOW another person in the US is going to receive a diagnoses of Parkinson’s disease. They will learn that while their symptoms are manifesting now, 80% of the brain cells that produce the necessary dopamine we all need died a long time ago. And they are going to learn that, as of today, there is NOTHING we can do to fix that.

I DON’T WANT YOUR MONEY, I WANT A CURE!

But I’m asking anyway. Please consider a donation to http://pantulips.kintera.org/faf/donorReg/donorPledge.asp?ievent=1105485&supId=379770172.

Take My Brain. Please.

Many of us in Idaho would really like to see Parkinson’s research (and research funding) come to our local universities. Many of us in Idaho’s Parkinson’s community would like to participate in studies and trials. We really want to do our part, honest, but the reality is that it’s just really hard (and expensive) for many of us to travel to the areas where these studies are held. So some make the choice to do the only thing they can…donate their Parkinson’s brains to science so maybe we can help contribute to finding a cure for this awful disease.

I was contacted a few weeks ago by a hospice social worker who wanted information on how her patient and his family could make this final donation.  I was stymied, but took to the Parkinson’s chat rooms and found several options.  Only one was really viable for someone in Idaho, The Harvard Brain Bank.

The patient MUST fill out a form in advance, and MUST make sure family, hospitals/nursing homes know their wishes, and that the local funeral home is also aware of what the process is.  There are several hospitals in the state with the capability to do this.  THERE IS NO CHARGE TO THE FAMILY FOR THIS DONATION!  (Although I was warned some funeral homes charge an extra “delivery fee” to make the side trip to the hospital for the brain harvesting procedure). Time is of the essence in this process.

But I guess you could say time is of the essence for all of us…those with Parkinson’s and those who have loved ones who suffer from this disease.  To the family that reached out, know that you are in my thoughts as you reach the end of this journey with your Husband/Dad/Brother/Grandpa/Cousin/Friend. I grieve with you, and thank you for thinking of others during this painful time.

Now if you’ll excuse me, I have some pre-registration forms to fill out. (FYI they need non-Parkinson’s brains too).

Opposites Attract = Beautiful Alliances

I’ve been blessed over the last year to work with the team bringing Dance for PD to Boise. This is a unique dance therapy program for Parkinson’s disease patients created by the world famous Mark Morris Dance Group. There are many partners responsible for bringing this program to Boise this April, namely the dancers at Trey McIntyre Project. Other partners include Ballet Idaho and the Northwest Parkinson’s Foundation, as well as the local Parkinson’s community.

If you’ve never seen a TMP performance, you’ve missed out on a beautiful thing. As someone who inherited clumsy genes, I often leave a performance moved to tears by the beauty and genius behind their work. And that’s part of what makes Dance for PD such an unlikely partnership…dancers who have superior control over body and mind, working in partnership with a group of people who have an ever increasing loss of control of body and mind. And yet it works. Beautifully.

And I can’t think of a better way to celebrate Parkinson’s Awareness Month than to launch this during the month of April.

The big philosophical question and the little flower answer

The other day my super smart cousin Martin, the doctor, posed a question on Facebook…”how do you explain something to someone who has never experienced it?” Lots of discussion ensued, but it got me to thinking about how to describe grassroots advocacy to someone who has never experienced it before.

I’m a gardener. Not a great one, but a passionate one. So it should be no surprise that I came up with a flower to describe grassroots advocacy. (And no, it’s not a tulip). Meet iris reticulata, the teeny weeny little harbingers of spring in my garden.

The first year I planted these bulbs I was so excited…I didn’t know at the time that iris reticulata aren’t the beautiful giant blooms I remembered from my time in Japan. They are miniature versions. Small. And that first spring only a few lonely blooms sprang forth just a few inches above the soil. I was so disappointed! I was expecting instant success.

The next spring there were a few more blooms. The spring after that even more. You see, while they are still small, they are spreading. In a few years I envision a carpet of miniature iris gracing my garden.

And this is how I would describe grassroots advocacy to someone who has never experienced it. It starts small…with one tiny bulb, and one or two tiny blooms…at first. It grows slowly, but it does grow and it spreads. And maybe that’s part of the reason grassroots advocacy works. If we had an issue that spread like wildfire, it would burn out quickly and leave nothing behind. This slow and steady growth is what helps propel the grassroots message forward and take root.

And you know what they say…to plant a garden is to believe in tomorrow.

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A Whole Lotta Firsts at PAN Forum 14

Last week I completed my fourth year representing Idaho at the Parkinson’s Action Network (PAN) Forum in Washington, DC. In our world of advocacy, that makes me an old timer. But this year was so full of firsts, it may as well have been my first time there. Here is a breakdown of my Top Forum Firsts:

1. For the first time Idaho has a full PAN Leadership Team. I was joined by Assistant State Directors Vera DeMay from Boise and Grove Ayers from Coeur d’Alene. (FYI, we are looking to hire an Assistant State Director from Eastern Idaho…the hours are flexible and the pay is knowing you are actively helping to create an environment to find a cure for this terrible disease).

2. This was the first year we called on Capitol Hill where we weren’t in danger of sequestration or shutting down the government the very next day. It was a refreshing change, although asking for the government to not only protect but to increase biomedical research funding is always a challenge. This year two out of the three members of Idaho’s Congressional delegation we were able to meet with pledged their support to help protect the NIH budget. Thank you Senators Jim Risch and Mike Crapo!

3. This was the first year we got to meet face-to-face with one of our congressmen who hasn’t had time for us in the past. Scheduling all these appointments on one day is a logistical nightmare, and doesn’t always mean they don’t want to meet with us. While this was a huge scheduling success, we were stunned when he advised us to speak to the Congressman from Maryland…another state…even though each member in our group was a registered voter in his district. Some might even call us his constituents.

4. This was the first time our advocacy team (Idaho and Washington teamed up for our visits) that we had a Physician Scientist on our team. If you want to know how critical it is is to support research funding, talk to the scientist who treats Parkinson’s patients and is trying to find a cure or new treatment while living in fear that the funding necessary for this research will run out any day and that she and her entire team will be out of jobs. We just worry we’ll run out of time.

5. I cried in public, telling my family’s Parkinson’s story. I know some girls can cry on cue…those of you who know me well know I’m not a crier. I was mortified to be sitting in my congressman’s office bawling. But it just goes to show how huge the burden is, and how desperate we are for a cure.

6. But to end on a positive note, this was the first year I really felt like we, the Idaho Parkinson’s community, are being remembered and heard. Congressional staffers are constantly turning over, but they are remembering us! People from Idaho called in all day while we were on the Hill, in support of our team and the message we were delivering to our Members of Congress. Our voices are being heard, and we ARE making a difference.

It was the first year I felt that little burning ember of hope fan into flame. Thank you to everyone who advocates with us and for us.