An Open Letter to Idaho’s Congressmen

Senator James Risch

Senator Mike Crapo

Congressman Raul Labrador

Congressman Mike Simpson

I am writing in support of the 2016 Parkinson’s Day of Action.  Today our Idaho delegation will be meeting with you and your team to ask for your support of issues critical to the Parkinson’s community. I regret that I am not there in person this year.  It’s ironic that over the years in our meetings I have used the example of the long-term battle with Parkinson’s disease compared to the shorter battle with cancer.  It’s ironic because just a few months after losing my Dad to Parkinson’s, my husband is now in the fight for his life with a rare and aggressive form of cancer.  With a front row seat to the ravages of both diseases, I can assure you they are both terrible. The physical, emotional and financial toll these diseases take on your constituents and their families is catastrophic.  

What is even worse is the fact that we, the world leader in so many things, still lack basic knowledge of Parkinson’s disease.  Who’s gets it?  Where?  What do they have in common?  How can we begin to properly allocate the limited funding resources we have if we don’t know where it will be most effective?  To that end, I implore you to please support the following:

·Advancing Research for Neurological Diseases Act (S.849/H.R. 292), which would create a national data registry for Parkinson’s and other neurological diseases at the Centers for Disease Control.

· Promoting telemedicine and supporting other access to care initiatives that have immediate impact on the ability of people with Parkinson’s to receive the best treatment possible and ensure a better quality of life.  This is absolutely critical in our great state of Idaho, where we don’t have a single Movement Disorder Specialist and your constituents must travel out of state to receive this level of Parkinson’s care, if they receive care for the disease at all.

· Continuing to strengthen funding for medical research that will lead to better options for managing Parkinson’s, more effective treatments, and eventually a cure.

As always, I invite you and your team to contact me directly with any questions you may have.  You may also contact the staff at the Parkinson’s Action Network for specific bill information.

Lisa Bain

Idaho State Director, Parkinson’s Action Network

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.

Parkinson’s Action Network – Making A Difference in the Lives of All Living with Parkinson’s Disease

Israel Robledo

Involvement as an advocate at any level takes time, effort, and patience. If there is an organization that fulfills the need for keeping up with policies and issues that affect the Parkinson’s community, the Parkinson’s Action Network is a must-join organization that allows you to take an active role in advocacy.

The spectrum for involvement starts at the e-advocate level, includes specific district delegates, and the assistant state director level. The time commitment depends on the extent that you’re interested in getting involved. The e-advocate responds to specific e-mails that PAN sends out when there is a pending vote, and support is needed from your member of Congress on an issue. The district delegate role is unique because your congressman is a key member and usually sits on a committee that deals with Parkinson’s related policies and your help is needed to contact them, seeking their help on a…

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There But For The Grace Of God…

Well said.

The Crooked Path

I had not intended to write about Robin Williams. All I know about him is from his professional presence, and I have no right to express a viewpoint about how he lived his personal life. His death is still too fresh, and still too painful for most, for the witty dialogue that seems to be going on in the news media and among the talking heads on the various radio and TV shows.

I learned today, however, that he was a person with Parkinson’s disease. He was still in the early stages of the disease, but I know that severe depression is a fundamental feature of Parkinson’s for many PWPs. It was for me. His private battles with depression over the course of most of his professional life, as well as his obvious attempts to self medicate with drugs and alcohol were possibly, if not likely, the result of his…

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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).

Congressional Briefing Comments – The State of Technology-Enabled Care

Proud of my fellow Parkinon’s advocate! He so eloquently lends his voice to the entire Parkinson’s community, and we are forever grateful for his continued efforts.

Israel Robledo

Following are the comments I made at the congressional briefing on 3-13-14:

Thank you for the opportunity to take part in this briefing. My name is Israel Robledo. I was diagnosed with Parkinson’s Disease in 2007 at 42 years old. I had dealt with the symptoms that included tremors, rigidity, balance issues, and slowness in movement five years prior to that time. As a result of my neurologist in Midland, Texas, whom understood the importance of a good health-related quality of life, I was able to and continue to receive the best specialized care for my progressive, neurodegenerative, incurable disease. I must share that I consider myself blessed to have the partnership with a neurologist who said, “I don’t know what it will be like for you in five or ten years, but in the meantime, I want you to have the best quality of life possible”. He went on…

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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.