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.
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.
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.
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.
Earlier this week I had the opportunity to visit with an advocate for the working caregiver. You know them, they are the people who are working yet still manage elder care responsibilities; the people who put careers on hold (or at risk); the people who save the government billions of dollars in unreimbursed care expenses; people like me..
The very next day the Idaho Statesman published an article about this topic. (http://www.idahostatesman.com/2013/02/19/2457638/caught-in-the-parent-care-trap.html). Later that week a report was published about the economic burden faced by America’s family caregivers (http://www.parkinsonsaction.org/news/14-4-billion-economic-burden-of-parkinson-s-disease-takes-toll-on-families). Coincidence or evidence of an epidemic?
The case of the working caregiver is the other, often hidden, side of diseases like Parkinson’s. I advocate for protected NIH funding for biomedical research because we desperately need a cure and even a one year delay in research can add 15 years for a cure to reach the hands of patients. I advocate for better access to medical care to the Veterans we made promises to, who have developed diseases like Parkinson’s due to chemical exposure and traumatic brain injuries (TBI). I advocate for Congress to protect these things in the face of looming sequester, all without any consideration to the costs of the working caregivers, the people like me.
There are no easy answers facing Congress. I’ve seen the charts and graphs that spell out the future debt for Medicare and other programs. What those charts leave out is the debt burden currently being paid by working caregivers. The smart decision is to invest in research for cures and prevention now, and spare future generations the burden of ever knowing what it means to be a working caregiver at all.
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.